THE MASSACHUSETTS
AUTISM COMMISSION
REPORT
MARCH 2013
OUR VisiOn
The Autism Commission envisions
a Commonwealth in which all
individuals with autism have full
access, throughout their lifetimes,
to all the supports and services
they require to be contributing,
productive, and fulfilled members of
our community, to the fullest extent
of their desire and capability.
OUR VisiOn
The Autism Commission envisions
a Commonwealth in which all
individuals with autism have full
access, throughout their lifetimes,
to all the supports and services
they require to be contributing,
productive, and fulfilled members of
our community, to the fullest extent
of their desire and capability.
TABLE OF CONTENTS
I. Letter from the Chair .....................................................................................2
II. List of Commission Members.........................................................................4-5
III. Executive Summary ........................................................................................6-8
IV. Autism in Massachusetts................................................................................9-10
V. Priorities, Findings, and Recommendations..................................................11-32
VI. Implementation Chart....................................................................................33-48
VII.
Appendices .....................................................................................................49
Appendix A. Legislative Resolve .................................................................50
Appendix B. Overview of Commission Process ..........................................51-52
Appendix C. Reports from State Agencies on the Delivery of Services
and Supports for Individuals with Autism Spectrum Disorder..................53
1. Department of Public Health – Early Intervention............................55-57
2. Department of Developmental Services............................................58-68
3. Massachusetts Rehabilitation Commission........................................69-72
4. Executive Office of Elder Affairs-Mass Health
Office of Long Term Services and Supports.......................................73-74
5. Department of Mental Health ...........................................................75-82
6. Department of Early Education and Care..........................................84-87
7. Department of Elementary & Secondary Education.........................88-90
8. Department of Higher Education ......................................................91-94
9. Department of Housing and Community Development ..................95-97
Appendix D. Introduction to Subcommittee Reports and the
Subcommittee Reports in their Entirety.....................................................98-164
1. Birth to Five Subcommittee................................................................100-121
2. Schoolage Subcommittee ...................................................................122-137
3. Transition Subcommittee....................................................................138-152
4. Adult Subcommittee...........................................................................153-164
Appendix E. Glossary ...................................................................................165-171
The entire report is available online at www.mass.gov/hhs/autismcommission.
TABLE OF CONTENTS
I. Letter from the Chair.......................................................................................2
II. List of Commission Members...........................................................................4-5
III. Executive Summary ..........................................................................................6-8
IV. Autism in Massachusetts..................................................................................9-10
V. Priorities, Findings, and Recommendations....................................................11-32
VI. Implementation Chart......................................................................................33-48
VII.
Appendices .......................................................................................................49
Appendix A. Legislative Resolve .................................................................50
Appendix B. Overview of Commission Process...........................................51-52
Appendix C. Glossary ...................................................................................53-58
The entire report is available online at www.mass.gov/hhs/autismcommission.
i i
LETTEr FrOm ThE ChAir
March 2013
The Honorable Deval L. Patrick
Governor of Massachusetts
The Honorable Therese Murray
Senate President
The Honorable Robert A. DeLeo
Speaker of the House
Re: Report of the Special Commission Relative to Autism
Dear Governor Patrick, Senate President Murray and Speaker DeLeo:
On behalf of the Massachusetts Autism Commission, I am proud to present the Priorities, Findings
and Recommendations of the Governor’s Special Commission Relative to Autism. Enacted in
April of 2010, the Commission was directed to determine the current status of available services
and supports, to identify gaps and to make recommendations to better serve individuals on the
Autism Spectrum. Our commitment was to examine the issues for people of all ages–children and
adults alike–along the entire spectrum from classic Autism to Asperger’s syndrome.
The Commission began meeting in October of 2010 and assembled bipartisan members of the
MA State Legislature to work in collaboration with relevant state agency representatives, leading
medical practitioners, educators, advocates and parents. In addition, we expanded our ranks with
input from four hard working subcommittees, which provided in-depth study and evaluation of
the issues that individuals with Autism encounter throughout their lifespan.
The work of this Commission is the next major step for the Commonwealth of Massachusetts,
which has been a national leader on Autism issues with the establishment of the Division
of Autism, the passage of the ARICA Autism Medical Insurance Law, the Autism IEP Act, the
development of the Children’s Autism Medicaid Waiver Program, and the actions taken to ensure
the protection of students with Autism from bullying.
Despite all of these efforts, the Autism Commission has determined that tremendous gaps in
services and supports still persist and that there is a critical need to develop a comprehensive
statewide approach that will respond to the needs of this burgeoning population. For example,
our findings confirmed that many children and their families continue to struggle to receive
the educational, behavioral, social and emotional supports necessary to transition to adulthood
at age 22 and often leaves many without the specialized programming and assistance that is
essential to ensuring success in the community. Beyond this, three critical needs were identified:
2 Report from the Governor’s Special Commission Relative to Autism | 2013
individuals with Autism of all ages need a single entity to provide comprehensive information
and referral support, mental health services are difficult to access and need to be widely available
and tailored to the unique needs of this population, and eligibility for adult services needs to be
based on functional ability rather than IQ. In addition, many adults need housing, job coaching to
obtain and retain employment, and case management to assist in realizing their potential.
The Commission has created a ten year roadmap to achieve our goal of developing
comprehensive supports and services for our children and adults with Autism. We strove to set
pragmatic timelines to achieve our goals. We recognized that there are certain expansions that
could be quickly and easily achieved and others that are more complex that will take much longer.
We looked to build upon programs with a record of proven success for which an investment of
money will produce an immediate positive impact, such as the DESE/DDS Residential Placement
Prevention Program, the Children’s Autism Medicaid Waiver Program and the Autism Support
Centers; and, we have also recognized that some improved outcomes do not need additional
funding, but merely require better coordination and collaboration among our state agencies.
While many of our recommendations do require additional financial resources to be
implemented, our recommendations also call for leveraging federal funding and we have already
begun planning to seek out private foundation funding where appropriate.
Given that Autism prevalence is increasing at an alarming rate, the Commonwealth must move
forward with a plan to better manage services and supports for people on the Autism Spectrum
so that they can realize their potential and participate fully in the community. The Commission
is committed to continuing its work in partnership with the Governor, the Legislature and state
agencies in order to accomplish these goals.
Respectfully submitted,
Barbara A. L’Italien
Chairperson, Massachusetts Autism Commission
3 2013 | Report from the Governor’s Special Commission Relative to Autism
ii ii
LiST OF COmmiSSiON mEmBErS
State Legislature Members
Senator Jennifer Flanagan, Leominster
Senator Richard Ross, Wrentham
Representative Garrett Bradley, Hingham
Representative Bradford Hill, Ipswich
State Agency Members and Designees
John Polanowicz, Secretary of Health and Human Services
Rosalie Edes, Deputy Assistant Secretary, Office of Disability Policies & Programs, Designee
Lauren Smith, Interim Commissioner Department of Public Health
Ron Benham, Director, Bureau of Family Health & Nutrition, Designee
Elin M. Howe, Commissioner Department of Developmental Services
Janet George, Asst. Commissioner, Policy Planning & Children’s Services, Designee
Marcia Fowler, Commissioner of Department of Mental Health
David Hoffman, Senior Psychiatrist, Metro-Southeast Area, Designee
Angelo McClain, Commissioner Department of Children and Families
Jan Nisenbaum, Assistant Commissioner, Clinical & Program Services, Designee
Matthew H. Malone, Secretary of Education
Marissa Cole, Deputy Chief of Staff, Designee
Aaron Gornstein, Undersecretary, Department of Housing & Community Development
Alana Murphy, Director of Policy, Designee
Joanne F. Goldstein, Secretary of Labor and Workforce Development
Leslie Seifried, Designee, Department of Career Services
Charles Carr, Commissioner of the Massachusetts Rehabilitation Coalition
Sherri Killins, Commissioner of Department of Early Education and Care
David McGrath, Designee, EEC
Mitchell D. Chester, Commissioner of Elementary and Secondary Education
Marcia Mittnacht, State Director of Special Education, Designee
Richard M. Freeland, Commissioner of Higher Education
Shelley Tinkham, Director for Academic, P-16, and Veterans Policy, Designee Freeland
Wayne Burton, President, North Shore Community College
Ann L. Hartstein, Secretary of Elder Affairs
Ken Smith, Director, MassHealth Office of Long Term Services & Supports, Designee
4 Report from the Governor’s Special Commission Relative to Autism | 2013
Citizen Commission Members Citizen Commission Members
Margaret Bauman, MD, Lurie Center for Autism, MGHfC, Founder of the LADDERS Program
Rita Gardner, MPH, BCBA, Executive Director, Melmark New England
Dania Jekel, MSW, Executive Director, Asperger’s Association of New England (“AANE”) and AANE
representative
Julia Landau, J.D., Director, Autism Special Education Legal Support Center of Massachusetts Advocates
for Children (“MAC”)
Karen Levine, PhD., Helping Children with Challenges
Barbara L’Italien, Chair and Parent
Sherry Amaral-Lopez, Community Autism Resources
Sue Loring, RN, Advocates for Autism of Massachusetts (“AFAM”) representative
Gerard McCarthy, Executive Director, Northeast Arc, Inc.
Margaret McPhee, PhD., Murphy and Dwyer Academy, Inc.
Evelyne Milorin, Parent
Daniel Rosenn, MD, Harvard Medical School
Amy Weinstock, AFAM representative
Michael Wilcox, CFA, AANE representative
Subcommittee Co-Chairs
Gloria Castillo, Transition Subcommittee Chair
Ann Guay, Adult Subcommittee Co-Chair
Dave Harmon, Adult Subcommittee Co-Chair
Louann Larson, Birth to Five Subcommittee Co-Chair
Richard Martin, Schoolage Subcommittee Co-Chair
Linda Schaeffer, Birth to Five Subcommittee Co-Chair
Judith Ursitti, Schoolage Subcommittee Co-Chair
52013 | Report from the Governor’s Special Commission Relative to Autism
iii ExECuTivE SummAry iii ExECuTivE SummAry
Purpose of the Legislative Commission
The Special Commission Relative to Autism was established by Legislative Resolve and approved
by Governor Deval Patrick on April 22, 2010. The Mission of the bipartisan Commission was “To
investigate and study current support and services, identify gaps and make recommendations for
strategies that will support the development of appropriate, collaborative and timely supports
and services across the lifespan of individuals on the [autism] spectrum.”
The mission charged the Commission to focus on:
• Best practices
• Increased coordination among state agencies
• Maximization of federal reimbursement and other resources
• Approaches to better serve individuals on the spectrum and their families
Per the Legislative Resolve, the Commission was directed to focus its work on issues affecting
all individuals on the autism spectrum, including, but not limited to, classic autism, Asperger’s
syndrome, High Functioning Autism and Pervasive Developmental Disorder, not otherwise
specified. The Resolve directed the Commission to investigate issues including, but not limited to:
• Coordination of state human service agencies
• Issues related to access for families of children with autism spectrum disorders
and adults who are from linguistically and culturally diverse communities
• Provision of adult human services
• Behavioral services based on best practices to ensure emotional well-being
• Mental health services
• Public education
• Mechanisms to ensure maximization of federal reimbursement
• Post-secondary education
• Job attainment and employment, including supported employment
• Housing
• Independent living
• Community participation
• Social and recreational opportunities
Throughout its work, the Commission has focused on developing recommendations related to
these issues.
6 Report from the Governor’s Special Commission Relative to Autism | 2013
Process
Acknowledging the broad range and diversity of issues and needs affecting individuals on the
autism spectrum throughout their lifespan, the Commission established sub-committees to
provide the opportunity for in-depth analyses and the development of recommendations on
specific issues affecting the following groups:
• Birth – Five
• School Age
• Transition to Adulthood
• Adults
Sub-committees were chaired by leaders in the Autism Community who were joined by numerous
professionals, parents, self-advocates, and others with specific interests and expertise in these
areas.
State Agencies from four Secretariats were represented on the Commission and these
representatives served as valuable resources to the citizen members. The findings and
recommendations were ultimately independently formulated by the citizen members and do not
imply the endorsement of any specific agency or the Patrick Administration.1
More than forty personal experiences and stories were also submitted by members of the public
at the request of the Commission. These vignettes describe how lives have been impacted
by autism, (both positively and negatively), concerns, frustrations, hopes and aspirations and
they have been inserted throughout the report to illustrate some of the key findings and
recommendations of the Commission.
1State Agency representatives have appreciated the opportunity to be active participants in the Commission proceedings and look forward to continuing their work
with this group, but have recused themselves from any of the final decisions on the findings and recommendations that are included in this report since most of
the recommendations are for action steps to be taken by the Administration. Upon the filing of the Report, the state agencies will share the recommendations with
others in the Administration and determine what action steps are possible. The Administration has deep appreciation for the dedicated and comprehensive work that
went into this effort as well as the spirit of the recommendations and looks forward to its continued work with the Commission on this critical issue.
7 2013 | Report from the Governor’s Special Commission Relative to Autism
1.
2.
10.
11.
12.
13.
AUTISM COMMISSION PRIORITIES
1.
2.
10.
11.
12.
13.
AUTISM COMMISSION PRIORITIES
Using the State Agency reports and the work of the sub-committees as a foundation, the
Commission prioritized its findings and recommendations into the following thirteen categories:
Expand eligibility criteria for the Department of Developmental Services so that
individuals with autism who have IQs over 70 and have substantial functional limitations
have access to services.
Assure that those with autism and a co-occurring mental health condition have equal
access to and appropriate services from the Department of Mental Health.
3.
Expand intensive services in the home and community for individuals with autism through
the Children’s Autism Medicaid Waiver, the Adult Medicaid Waivers, and the Department
of Elementary and Secondary Education/Department of Developmental Services
Residential Placement Prevention Program.
4.
Expand insurance coverage for autism treatments
5.
Increase and fortify supports and resources that make it possible to maintain the family
unit and assist individuals with autism to live in the community.
6.
Determine the number of people with autism in Massachusetts and their support needs by
implementing a plan for consistent statewide data collection.
7.
Improve access to autism screening, diagnosis, and Autism Specialty Services through Early
Intervention for children diagnosed with autism and those considered at high risk for
autism.
8.
Increase employment opportunities for individuals with autism by providing a range of job
training, job development, and employment opportunities.
9.
Increase capacity to provide educational supports and services necessary to meet the needs
of all students with autism.
Increase availability of augmentative and alternative communication methods, devices and
services for individuals with autism.
Increase the range of housing options for individuals with autism.
Improve the delivery of healthcare services for individuals with autism.
Assure that the Autism Commission’s Recommendations are implemented and outcomes
are monitored for effectiveness.
The Recommendations are diverse and extensive. It is understood and acknowledged that
implementation of many of these recommendations will require legislative actions, statutory
changes and/or financial resources and that some will take more time to implement than others.
They are, by intent, broad and ambitious. But collectively, they represent a vision and blueprint
for Massachusetts to address the needs of all individuals and families affected by autism.
8 Report from the Governor’s Special Commission Relative to Autism | 2013
iv AuTiSm iN mASSAChuSETTS iv AuTiSm iN mASSAChuSETTS
What is Autism?
Autism is a developmental disability that can cause significant social, communication and
behavioral challenges.2 Autism includes Asperger Syndrome and Pervasive Developmental
Disorder-Not Otherwise Specified (PDD-NOS).3 According to the CDC, “Diagnosing autism can be
difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look
at the child’s behavior and development to make a diagnosis.”4 EVERY individual with autism is
impacted differently by it and has unique needs.
“I am a single mom of two teen sons with autism. My 13 year old son has severe autism, bi-polar, mood
disorder and Celiac sprue. He is non-verbal and very active. He needs close watch and help with activities
of daily living including feeding himself. He is very friendly and sweet. He attends a private school in
Andover, MA and loves it. My oldest son has ADHD and a mild case of Asperger syndrome. He is lovable
and sweet and does well in the public high school he attends. He enjoys his friends and is active in chess
club and forensics debating team. My sons keep me very busy, but it’s very rewarding when you see how
happy they both are.”
Parent of two children with Autism, Worcester, MA
The Prevalence of Autism in Massachusetts5
The CDC estimates that 1 in 88 children have an autism spectrum disorder or approximately 1.1%
of the population.6 No comparable data are broken out for Massachusetts by the CDC. But, this
statistic, applied to the Massachusetts population of 6,646,1447 suggests that around 75,000
people in Massachusetts have autism.
This estimate assumes that prevalence is consistent across age groups. Yet we know from the CDC
numbers that rates of diagnosis have risen dramatically in recent years, stimulating lively debate
over whether this reflects a true increase in the prevalence of autism, or better screening and
diagnostic procedures, or a combination of the two.
The Commission was not charged with resolving this dispute and has simply taken the 75,000
estimate as a guideline for determining how many individuals in Massachusetts have autism.
Prevalence of Autism in the Massachusetts School-Age and Higher Education Populations
According to US Census data, 21.3% of the State’s population is under age 18. This suggests that
potentially 16,000 Massachusetts children under the age of 18 have autism.
2 http://www.cdc.gov/ncbddd/autism/index.html
3 Ibid.
4 Ibid.
5 In the absence of explicit and accurate data, the Commission has gathered what is available.
6 http://www.cdc.gov/mmwr/preview/mmwrhtml/ss5810a1.htm
7 The US Census Bureau estimate for 2012 http://quickfacts.census.gov/qfd/states/25000.html
9 2013 | Report from the Governor’s Special Commission Relative to Autism
In a study cited by the Commission’s School-age Sub-committee, in the 2010-2011 school year
approximately 12,000 students aged 6 to 17 were identified as having an autism diagnosis.8 The
difference of about 4,000 likely represents pre-school children (under age 6) with autism. Another
report by the Department of Elementary and Secondary Education (“DESE”), from the same
time period, stated approximately 10,000 children aged 6-21 “were found eligible for special
education due to disability on the autism spectrum.”9 Such relatively small discrepancies likely
reflect different data collection and reporting mechanisms, different definitions of disabilities,
and utilizing different disability categories (such as neurological disability) to classify children with
autism.
In a survey conducted by the Department of Higher Education10 26 public institutions of higher
learning reported 582 students identified as having autism. This figure represents only about 25%
of 1% of the total enrollment of students with autism, so it likely understates the true prevalence
of autism in the college population.
8 See School-age sub-committee report in Appendix F
9 See Department of Elementary and Secondary Education’s report in Appendix E
10 See Department of Higher Education’s report in Appendix E
10 Report from the Governor’s Special Commission Relative to Autism | 2013
vv
PriOriTiES, FiNdiNgS ANd rECOmmENdATiONS
Introduction
The Commonwealth of Massachusetts is a leader among states in providing services to individuals
with disabilities. In recent years, rates of diagnosis of autism in both children and adults have
increased dramatically. The spike in the number of individuals diagnosed with autism has placed
strain on an already stressed system that was not originally designed to serve the growing
number of individuals living with autism in Massachusetts. While demand for services has
increased, government programs designed to assist individuals with autism have not kept pace
for a number of reasons: (1) fallout from the economic downturn, resulted in cuts in funding for
services and prevented the expansion of programs which successfully serve children and adults
with autism, (2) lack of autism expertise among staff in government agencies, and (3) insufficient
capacity to meet increased demand for services.
Children and adults with autism have a very broad range of needs, which vary from person to
person as well as over the course of an individual’s lifespan. Meeting the diverse needs of this
population is a challenge that requires creative solutions, new programs, systemic changes,
and additional financial resources. In the long run, improving autism services will benefit the
Commonwealth as a whole. With appropriate supports and services, individuals with autism will
become more productive, more self-sufficient, and more fully-integrated members of society.
The Massachusetts Autism Commission has developed the following Priorities, Findings,
Recommendations and Implementation Steps to help Massachusetts improve and expand
existing autism services to better meet the needs of our residents with autism. By implementing
the recommended changes, the Commonwealth will continue to be a leader among states in
providing services to individuals with autism and their families and providers.
State Agency representatives have appreciated the opportunity to be active participants
in the Commission proceedings and look forward to continuing their work with this
group, but have recused themselves from any of the final decisions on the findings and
recommendations that are included in this report since most of the recommendations
are for action steps to be taken by the Administration. Upon the filing of the Report, the
state agencies will share the recommendations with others in the Administration and
determine what action steps are possible. The Administration has deep appreciation for
the dedicated and comprehensive work that went into this effort as well as the spirit of
the recommendations and looks forward to its continued work with the Commission on
this critical issue.
“He needs oversight, management and someone to advocate for him; services currently provided by his
aged parents. In the not so distant future someone else will have to pick up that role. His siblings will
do some of it but what they can do is limited. He needs support and a place in society.”
Parents of 54 year old man with Autism, Lexington, MA
11 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority
#1
Expand eligibility criteria for the Department of Developmental Services so that individuals with
autism who have IQs over 70 and have substantial functional limitations have access to services.
Findings
The Department of Developmental Services (“DDS”) has two different sets of eligibility criteria
for children and adults seeking services through the Department. Because there are two sets of
criteria, even if individuals apply and are found eligible for DDS before the age of 18, these same
individuals must apply for eligibility before he or she turns 18. The DDS eligibility criterion for
individuals 18 and over is twofold: the individual must have an IQ of 70 or lower and significant
limitations in adaptive functioning. Many individuals with autism do not have an IQ lower than
70 but do have significant adaptive functioning limitations. Despite this, if individuals have
IQs higher than 70, they are currently found ineligible for services through DDS. In the first
quarter of 2012, 25% of individuals who applied for adult services through the Department of
Developmental Services were found ineligible; 41% of the individuals who were found to be
ineligible had an autism diagnosis.11
“His most recent round of testing showed huge variation among subscores but an overall IQ of 72. This
is a young man who cannot be outside independently. He has no judgment and no sense of propriety
so that he continually gets into trouble when he is unsupervised. He has little ability to care for himself
inside the home and requires supervision. We applied to DDS, went through every level of appeal. In
the final report they agreed with the notion that our son is not functional enough but his IQ was too
high and he was found ineligible for DDS services.”
Parents of a 21 year old with Autism, Newton, MA
Recommendations
Entity Responsible: DDS, State Legislature
A) DDS will no longer use an IQ-based eligibility requirement for adult services. Rather,
eligibility will be determined by using the federal Developmental Disability Act definition
of a developmental disability that takes into account a range of limitations in adaptive
functioning skills.12 Short-term13; amend statute and regulations; DDS will need an increase in
financial resources to support more individuals
B) On a quarterly basis, DDS will report to the Autism Commission the number of individuals
with autism applying for services who are found to be ineligible. Short-term
11 Department of Developmental Services.
12 Public Law 106 (8)
(A) The term ‘‘developmental disability’ means a severe, chronic disability of an individual that:
(i) is attributable to a mental or physical impairment or combination of mental and physical impairments;
(ii) is manifested before the individual attains age 22;
(iii) is likely to continue indefinitely;
(iv) results in substantial functional limitations in 3 or more of the following areas of major life activity:
(I) Self-care.
(II) Receptive and expressive language.
(III) Learning.
(IV) Mobility.
(V) Self-direction.
(VI) Capacity for independent living.
(VII) Economic self-sufficiency; and
(v) reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are
of lifelong or extended duration and are individually planned and coordinated.
13 Despite this recommendation needing both financial resources and updated statutes and regulations to be implemented, the Commission labeled it as “Short-term”
because the Commission believes it can be implemented during the 188th legislative session, January 1, 2013 to December 31st, 2014 due to recent discussions about
eligibility at the DDS.
12 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority
#2
Assure that those with autism and a co-occurring mental health condition have equal access to
and appropriate services from the DMH.
“Since S.G.’s IQ tested well above the 70 point cut-off for DDS services, they turned to DMH. After
both a prolonged application and an appeal, they were told that S.G. is not eligible for DMH because
he is on the autistic spectrum. Despite his significant depression, Mood Disorder NOS, rage reactions,
and a host of other psychiatric symptoms, they were told by DMH that he did not have a major mental
disorder which would qualify him for their services.”
Professional, Boston Metro Area
Findings
Many individuals with autism have co-occurring mental health diagnoses. In a study of 112
children diagnosed with autism, 70% of children had at least one comorbid disorder and 41% of
the same sample had at least two comorbid disorders.14 Some research has studied the likelihood
of adults with autism developing psychotic symptoms and schizophrenia.15 This same research
discussed the difficulty practitioners have distinguishing between autistic symptoms in adults and
some non-psychotic symptoms of schizophrenia.16 The high number of individuals with autism
who have mental health issues, combined with the difficulties of properly identifying these
issues, makes it difficult for many people with autism to receive accurate diagnoses and effective
treatment.
The Department of Mental Health (“DMH”) is the state agency responsible for providing
assistance to individuals with mental health issues. The application for services through DMH is
a two-step process. First, individuals must meet DMH’s clinical criteria to receive services, which
differ for children and adults. In order to meet the clinical criteria for DMH services, children
must have a serious emotional disturbance that results in functional impairment. The emotional
disturbance does not have to be the primary cause of functional impairment.17 Thus, so long as a
child’s functional impairment is not solely the result of autism, a child with co-occurring serious
emotional disturbance and autism may be eligible for DMH services.
To meet the clinical criteria for adult DMH services, an adult must have a serious mental illness
that is determined to be the primary cause of his or her functional limitations.18 An adult whose
functional limitations are primarily due to an autism spectrum disorder may be found ineligible
for DMH services, even if he or she has a secondary serious mental illness diagnosis. Due to
different clinical eligibility criteria for adults and children, an adult who received DMH services as
a child, but who does not have a serious mental illness as an adult, or whose serious mental illness
is not the primary cause of his or her functional impairment, may not be approved for DMH adult
services. The differences in clinical eligibility criteria for adults and children can potentially disrupt
treatment for individuals with autism.
14 Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorder: prevalence, comorbidity,
and associated factors in a population derived sample. Journal of the Academy of Child and Adolescent Psychiatry, 47(8), 921-929.
15 Nylander, L. (2008). Autism spectrum disorders and schizophrenia spectrum disorders – is there a connection? A literature review and some suggestions for future clinical
research. Clinical Neuropsychiatry,(5)43-54.
16 Ibid.
17 DMH Regulations: 104 CMR 29.00 Clinical Criteria to receive DMH services as a child http://www.mass.gov/eohhs/gov/laws-regs/dmh/regulations.html
18 DMH Regulations: 104 CMR 29.00 Eligibility for Adult Services http://www.mass.gov/eohhs/gov/laws-regs/dmh/regulations.html
13 2013 | Report from the Governor’s Special Commission Relative to Autism
Second, the individual must be in need of a service that DMH provides and has available.
Consistent with DMH’s primary mission to serve individuals with serious and persistent mental
illness DMH’s community services are designed to meet the needs of this population. Those
services are often not suitable for individuals with autism who require specialized services to
address their mental health needs since they are individuals with a developmental disability. As
a result, individuals with autism may be found ineligible because their needs cannot be met by
currently available DMH services.19 It is also important to note that individuals with autism who
are eligible to receive services through DDS are “categorically excluded from consideration of
DMH services.”20 This practice creates some challenges in meeting the needs of individuals with
autism who have co-occurring mental illness and significant mental health service needs.
“After one exceptionally troubling episode when he angrily entered his parents’ bedroom in the middle
of the night, he was hospitalized for 24 hours, and discharged on increased medications. When his
private psychiatrist tried to dissuade the discharging psychiatrist from sending him home so soon
(where he might attack his parents again and, because of pending charges, end up in jail) the hospital
psychiatrist told him, “Going to jail might teach him a lesson.”
Professional, Boston Metro Area
Recommendations
Entity Responsible: DMH; DDS; State Legislature
A) Applicable statutes, regulations and policies will be revised to state that a primary
diagnosis of autism will not be used as grounds to find an adult ineligible for DMH
services.21 Short-term22; regulations and statutes need to be updated; DMH will require
increased financial resources
B) On a quarterly basis, DMH will report to the Autism Commission the number of individuals
with autism applying for services who are found to be ineligible. Short-term
C) DMH will improve its level of clinical expertise regarding the treatment needs of
individuals with co-occurring mental illness and autism. Short-term
D) DMH will develop more services that are tailored to meet the needs of individuals with
autism and co-occurring mental illnesses. Medium-term; Increased financial resources will
be needed
19
Autism Commission Report-State Agency Section (July 2012) Department of Mental Health section. “Individuals with autism and co-occurring mental health diagnoses
are not able to access mental health services through Department of Mental Health because the department’s services are not designed to address the behavioral support
needs of this population.”
20
Information found on page 12 of the Department of Mental Health’s Interpretative Guidelines for 104 CMR 29.00 Determining Service Authorization for Children,
Adolescents and Adults December 2009 (revised November 17th, 2010) http://www.lawlib.state.ma.us/docs/interpretive_guidelines.pdf
21
See DMH Regulations: 104 CMR 29.00 Section 29.04:Application for DMH Services; Clinical Criteria and Determination of Need (2) Clinical Criteria for DMH Services.
(a) To meet the clinical criteria to receive DMH services, an adult must have a mental number 2. Mental illness is the primary cause of a functional impairment that
substantially interferes with or limits the performance of one or more major life activities, and is expected to do so in the succeeding year
22
Despite this recommendation requiring statutes and regulations to be changed as well as funding it is labeled “Short-term” because increasing access to DMH services
for individuals with autism is a priority for the Commission.
14 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority
#3
Expand intensive services in the home and community for individuals with autism through the (3A)
Children’s Autism Medicaid Waiver and Adult Medicaid Waivers and the (3B) DESE/DDS program
3A) Medicaid Waivers
Children’s Autism Waiver Program
Findings
The Children’s Autism Waiver Program is a Medicaid program that provides intensive in-home
and community based services to MassHealth eligible children under age 9 who have an autism
diagnosis and are at risk for institutionalization. The Waiver Program is administered by the
Department of Developmental Services’ Autism Division, and up to 157 children may participate
in the Waiver program at any given time. Over the course of the Waiver year, 205 children may be
served even though it is estimated that there are approximately 6,000 low-income children with
autism receiving MassHealth. The federal government reimburses Massachusetts at 50% of the
cost of the Waiver Program. Children chosen to participate in the Waiver program are eligible for
up to $25,000 a year of services for a three year period up until their 9th birthday.
Upon completion of three years of intensive home-based services, children enrolled in the Waiver
may receive supplemental services, including respite and home consultation services to assist with
the transition from the Waiver Program. During the most recent open enrollment period in April
2012, more than 800 families applied for the Waiver.
Recommendations
Entity Responsible: DDS; State Legislature
A) Increase the appropriation for the Children’s Autism Waiver Program. Short-term;
increased resources
B)
Amend the Waiver and initially expand the number of children (ages birth through age
8) served from 157 to 500. To ensure adequate funding for expansion of waiver services,
establish a DDS retained revenue account which retains Medicaid Reimbursement fees for
waiver services. Short-term; increased resources
C) Designate at least two enrollment periods per year to allow parents to plan accordingly.
Short-term
D) When the Autism Waiver is renewed in two years, DDS will expand the Waiver to create
Waiver Services for children ages 9-22. For this older cohort, the Commission recommends
that the waiver offer a broad array of flexible in-home and out-of-home services. Medium-
term; increased resources
Adult Waiver Program
Findings
Massachusetts has three adult waivers that serve DDS eligible adults, including many with autism
who meet the current DDS eligibility criteria.
•
The Residential Waiver provides supports to eligible adults who require 24 hours per day
of support. Many of them have serious medical, behavioral and/or physical needs. They are
not able to live at home and require round the clock support. There is no dollar limit for
services. Current capacity is 8,200 adults.
15 2013 | Report from the Governor’s Special Commission Relative to Autism
•
The Community Living Waiver provides services to DDS-eligible adults who require a
moderate level of assistance and live in their own home or with a provider. They do
not require round the clock support. The dollar limit of support under this waiver is
$65,000 annually. Services include supported employment, day habilitation supplement,
transportation, homemaker services, assistive technology and behavioral supports
consultation. Capacity is 2,300 adults.
•
The Adult Supports Waiver provides services to eligible adults who require supports to
reside successfully in the community. Services can be client-directed or offered through
a traditional provider-based system. The dollar limit is $28,000 per year. Services include
group or center based day supports, individual support, community habilitation, respite,
supported employment, family navigation and transportation. Capacity is 2,800.
These three waivers will be renewed in the spring of 2013 for a five year period commencing July
1, 2013.
Recommendations
Entity Responsible: DDS
Since the Adult Waiver Programs are up for renewal in 2013, immediate steps should be taken
to expand and improve the specialized services available for adults with autism enrolled in the
Waiver Programs:
A) Assuming expanded eligibility will be implemented, it will be necessary to increase the
number of waiver slots to ensure waiver services for those newly eligible. Short-term;
increased resources
B) Provide intensive case management by adding a group of trained workers with extensive
autism experience to assist with development of individual support plans provide on-going
support and technical assistance for in-home behavioral supports and coordinate and
organize services. There will need to be a sufficient number of case managers to meet the
increased demand for services due to changes in eligibility criteria. Long-term; increased
resources
C) Increase the availability and expertise of Behavior Support Consultation for DDS eligible
adults and reframe behavioral service delivery in group homes to meet the behavioral
needs of adults with autism. Medium-term; increased funding
D) Expand and develop additional specialty day and employment programs tailored to meet
the needs of adults with autism, including those with severe challenging behaviors. Long-
term; increased resources; structural changes; research and development
E)
Require school districts to provide written information to families of students with autism
transitioning into adult services about the availability of the three adult waivers. Short-
term
3B) The DESE/DDS Residential Placement Prevention Program
Findings
The DESE/DDS Residential Placement Prevention Program (“DESE/DDS Program”) provides
supports to families to keep children at home and reduce the risk for residential placement of
students who are in school and DDS eligible. It also provides supports to families who opt to
bring their children home from a residential placement. Children must be 6-17 years of age at
the time of enrollment in the Program. The Program is well-suited for children with autism and
provides additional resources to families. The DESE/DDS Program is funded by the state through
16 Report from the Governor’s Special Commission Relative to Autism | 2013
funds allocated to DESE and administered by the DDS. According to DDS, “The DESE/DDS Program
currently serves 485 participants across the Commonwealth; approximately 90% of participants
have an autism spectrum diagnosis.” DDS closed the waiting list for DESE/DDS and stopped taking
new applications in 2009. In FY 12, DDS eliminated the waiting list and fully funded all but 20
participants, who received partial funding; DDS expects to fully fund them all in FY 13.
“He is a participant in the DESE/DDS program. This provides resources which we utilize to support
his opportunities to participate and integrate him into our family and community. Through the
program, he attends a specialized day school where he receives an education which meets his unique
educational needs. He also receives Personal Care Attendant services to help him attend successfully
to dressing and grooming.”
Mother of a 14 year old with Autism, Sterling, MA
Recommendations
Entities Responsible: State Legislature, DDS, and the DESE
A) Since there is currently no wait list, DDS will initiate a new application process and expand
the number of slots available for students requiring these services. DDS will then maintain
a wait list of students who are found eligible but for whom funding is not available.
The Autism Commission will receive annual updates from DDS regarding the number of
students on the wait list. Short-term
B) Increase funding for the DESE/DDS program in order to serve more individuals in this
program. Short-term
Priority
#4
Increase insurance coverage for autism treatments.
Findings
ARICA, the 2010 law in Massachusetts requiring private insurances to cover autism treatment
is starting to have a major effect on people’s ability to access treatment, especially behavioral
treatment. However, the law only applies to state-regulated plans. Many large employers have
self-funded plans, which are federally regulated, and exempt from state law. While some have
voluntarily adopted coverage, many have not, making it very difficult for some to obtain services
paid for through insurance.
In addition, MassHealth is not subject to ARICA. While MassHealth covers some treatments
(some children are covered under the Autism Waiver), there is generally less autism coverage
available, including coverage of ABA services, for MassHealth clients than for people who have
private coverage. Only 157 recipients are covered under the Autism Waiver, while there are
approximately 6,000 low-income children with autism enrolled in MassHealth.
“MassHealth won’t pay for ABA services, which I think would benefit my child a great deal, and she
doesn’t qualify for the autism waiver, because she is 9 years old.”
Parent of a 9 year old with Autism, Athol, MA
17 2013 | Report from the Governor’s Special Commission Relative to Autism
The Department of Public Health’s Early Intervention (“EI”) program provides access to
comprehensive services and treatment for all children prior to age three. The DPH pays all costs
that are not covered by insurance and for eligible children who have no insurance. 23 Transitioning
from EI to the early childhood education system can be stressful for families. The frequency,
intensity and quality of services after EI often depends on the child’s Individual Education Plan,
the capacity of the local school district, and the type of insurance the child has. Some parents are
able to access autism services through their health insurance. Access to insurance that provides
coverage for autism treatment to children transitioning from EI is a crucial piece to enabling
continued progress for them. Unfortunately, many families insurance plans do not cover these
services.
MassHealth currently covers dedicated communication devices for people who require
Augmentative and Alternative Communication (“AAC”). These devices can be quite expensive,
cumbersome, and require significant maintenance to keep them working properly. In recent
years, with the development and proliferation of tablets and associated specialized software to
support AAC, some families who are able to afford them purchase them for their children. But
current MassHealth regulations do not cover non-dedicated communication devices (i.e.: tablets),
despite the significantly lower cost, greater functionality, and reliability.
“The insurance company will not deny services but it’s impossible to get them. They told me they
are on a committee to define services to be covered with the state. I pray all the fighting for the
ARICA law was not wasted. Social skills being one of the biggest issues with autism the social skills
groups which help with this should be covered. Most service providers for groups do not bother
taking insurance because the battle is so exhausting. I have to work full-time to have the insurance
coverage which leaves me without the time to fight the insurance company on a daily basis and care
for our family.”
A parent of a 12 year old with Autism, Worcester, MA
Recommendations
Entities Responsible: EOHHS; DOI; MassHealth; DPH
Private Insurance
A) EOHHS will reach out to large self-funded employers to educate them about the insurance
law, and the importance of covering autism treatment for their employees. Short-term
B) EOHHS and DOI will explore ways to recoup from self-funded employers the additional
direct costs incurred by the State due to lack of coverage for autism treatment. Short-term
MassHealth
C) Require MassHealth to take action necessary (including approval from the Centers for
Medicare and Medicaid Services, if required) to cover medically necessary treatments
for individuals with autism, including, but not limited to, Applied Behavior Analysis,
supervised by a Board Certified Behavior Analyst (BCBA). Medium-term, legislation needs
to be filed
D) Require MassHealth to revise regulations to cover both dedicated and non-dedicated (e.g.,
tablets), for people who require Augmentative and Alternative Communication. Short-
term; update MassHealth Regulations
23 http://www.mass.gov/eohhs/consumer/community-health/family-health/early-childhood/ei/who-pays.html
18 Report from the Governor’s Special Commission Relative to Autism | 2013
Early Intervention
E) To assist families transitioning from EI to utilize all their available resources, EI will train
their staff about the autism insurance law, and develop tools to help staff and families
navigate insurance options for behavioral treatments after age 3. Families that have limited
or no options for behavioral treatments under their current insurance will be referred to
resources for information on possible alternatives for obtaining coverage. This should take
place before the child turns 2 (or as soon as possible if the diagnosis comes later). Short-
term
Priority
#5
Increase and fortify supports and resources that make it possible to maintain the family unit
and assist individuals with autism to live in the community.
Findings
To maximize a family’s ability to properly care for a loved one with autism in the community or
for an individual with autism to live as independently as possible in the community, it is critical
that they have access to information about state service options and assistance with navigating
both the private and public sector service system. Locating information on state service options is
a particularly time consuming task and many families report that there is an overwhelming and
confusing presentation of information about state services that can be difficult to decipher. The
different application procedures and eligibility requirements at every state agency are not only
confusing but they can also delay access to services.
There are a limited number of state programs that provide information and referral for this
population. The programs that are best suited to the needs of families with individuals with
autism are the seven community-based Autism Support Centers funded by the DDS Autism
Division; these Centers provide information and support to families on both state and private
resources. Due to the limited resources available, these Centers currently only serve children with
autism and their families. They do not have the capacity to work with all current DDS-eligible
children with autism as well as adults with autism.
As to service navigation, the supports available through the Children’s Autism Waiver are a
commendable example of the positive impact that this type of service can have. Families who
participate in this Waiver benefit from the support of a clinical case manager as well as an autism
support broker who attend to both the behavioral needs of the child as well as helping the
family access services and supports. Unfortunately, these services are only available to the limited
number of children who meet DDS’s eligibility criteria for waiver services and are selected to be in
the program.
“Because of the Asperger’s diagnosis, the DMH intake coordinator said he did not qualify for DMH
services. She did insist, however, that he would qualify for CBHI from MassHealth based solely on the
fact that he had an IEP. At that point I had already submitted identical applications for MassHealth
twice. They required us to submit an application which was first rejected based on our income. They
never gave us an option to apply directly based on disability. We wasted 5 months of time waiting
to be told we made too much money. All during that time, my son and our family struggled and
suffered. I had to quit my job in order to support him emotionally. This took a terrible toll on me
personally and our family’s income.”
Mother of an individual with Autism, Ludlow, MA
192013 | Report from the Governor’s Special Commission Relative to Autism
Assistance with navigating the system is even more limited for individuals with autism who are
not eligible for state services. Other constituencies have developed creative ways to disseminate
information to broad groups of individuals who are not eligible for state services. For example,
people looking for information on elder services in Massachusetts can use the 1-800-AGE-INFO
number and/or website to locate information. A resource like this, with reliable information on
autism services that could be accessed by individuals, regardless of their eligibility status for state
agency services, would be beneficial to entire the autism community.
Perhaps more vital than navigating services and gathering information is the ability to access
supports that are necessary to successfully function in the community outside of a structured
school, day program, or employment environment. Those eligible for state services can be
offered a range of in-home supports depending on need. DDS’s Family Support program offers
respite care, personal care assistance, medical equipment, therapies, training, support groups,
recreational and social activities as well as flexible funding to pay for extraordinary expenses to
those eligible for the program. Unfortunately, funding for Family Support services is not meeting
the demand in the Commonwealth. Only 3.5% of DDS’s funding is available for family support,
while family caregivers represent 60% of the individuals receiving supports.24
“I do struggle with not having any babysitter for him or the money to pay for one so I never get a
break. It’s very hard working full-time and having a home and taking care of two kids on my own...
especially one with low functioning autism.”
Parent of an 11 year old with Autism, Danvers, MA
Many families struggle to locate support providers who are knowledgeable about autism. The
need to expand the number of staff who work with individuals with autism and improve their
training is evident in homes where adults with autism reside without their families. Staff in adult
DDS residences are required to be trained in the basics of residence safety and care as well as
general information about the nature of developmental disabilities, but would benefit from
specialized training on how to support residents with autism. Furthermore, staffing levels in many
group settings are inadequate, both as to quantity and quality. Low compensation levels are a
hindrance to attracting qualified staff. Turnover is often high, and training levels are low, which
can lead to an unstable and potentially dangerous environment for residents and staff.
Recommendations
Entities Responsible: EOHHS; DDS; MassHealth
A) EOHHS will designate DDS’s Division of Autism as the single agency dedicated as a source
of information and referral for individuals with autism throughout their lives. Individuals
with autism will be directed to the Division of Autism whether or not they are eligible for
DDS. Medium-Term, organizational changes and increased funding
24 DDS In their Own Words: The Need for Family Support Services report
20 Report from the Governor’s Special Commission Relative to Autism | 2013
B)
To assist the Division of Autism with its new designation as the single agency dedicated
to offering information and referral to all people with autism, funding for the Autism
Support Centers will be increased to ensure consistency of the Centers’ quality of services
and information and to prepare the Centers to serve individuals of all ages. DDS will
determine what funding is required for each center to serve more individuals and will
determine the need for additional resources for the Autism Division. Medium-term
increased funding
C) The Division of Autism with support from EOHHS will create a website and telephone
number mirroring 1-800-AGE-INFO that individuals with autism and their families can
use to access information on state and private services that are available to assist them.
Medium-term
D) EOHHS shall form an Interagency/inter-Secretariat Work Group to include DCF, DPH, DDS,
MRC, MassHealth, DMH and DESE to develop policies to better coordinate overall services
and improve cross-agency and cross-Secretariat communication. The Committee shall
develop written recommendations which will address the gaps in services for adults and
children with autism focusing on individuals who are served by more than one agency. A
plan will be developed for better cross-agency care coordination and be submitted to the
Autism Commission. Short-term
E)
DDS shall promulgate regulations to improve how case management services are delivered
to adults with autism who are eligible for DDS by using the Children’s Autism Waiver as
the model for adult case management. Under the new system, case management services
will be provided by highly trained service coordinators specially trained in autism. Long-
term regulations change, structural changes and increased funding
F)
DDS will increase cross-agency training and technical assistance efforts so that the state
workforce has a better understanding of the needs of adults with autism. Short-term
G) Increase DDS’s funding for family support programs. Short-term
H) Autism Division and Autism Clinical Managers will work with paraprofessional training
programs to develop a program to train people to work as direct support providers for
people with autism. Medium-term
I)
Autism Division and Autism Clinical Managers will create paraprofessional training for
direct support providers program in school districts, community colleges and vocational
high schools. Medium-term
J)
Revise MassHealth regulations to broaden Adult Foster Care and Personal Care Assistant
(“PCA”) services to better meet the needs of individuals with autism and expand access to
respite care for families of adults with autism. Short-term; Revise MassHealth regulations
K) DDS will examine current staffing credentials, staffing levels at group homes, and
supportive living arrangements for adults with autism and ensure that there are adequate
staffing patterns and appropriately trained staff in order to meet the safety, behavioral
and health needs of individuals with autism Short-term
L)
Autism Division will establish and maintain a database of institutions offering courses,
certifications and degree programs in autism and autism related fields, and provide public
access via a centralized website and the Autism Support Centers’ websites. Medium-term
21 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority
#6
Determine the number of people with autism in Massachusetts and their support needs by
implementing a plan for consistent statewide data collection.
Findings
State agencies utilize different, incompatible tracking systems, which makes it difficult to
obtain comprehensive data on people with autism in the Commonwealth. For example, DMH,
Department of Early Education and Care (“EEC”), Department of Higher Education (“DHE”) and
MassHealth have data on the number of individuals utilizing each service in their agency but
none of these agencies maintain data on the total number of individuals with autism they serve.
Department of Elementary and Secondary Education (“DESE”) keeps data on the number of
students with autism receiving special education services but these data under-reports the true
incidence of autism, as it reflects individuals with autism designated as the category of disability
on Individualized Education Plans (“IEP”), while many times schools will classify autism utilizing a
different disability category, such as “neurological disability, developmental delay.” DPH follows
the number of children with autism utilizing Early Intervention services and Massachusetts
Rehabilitation Commission (“MRC”) tracks the number of individuals with autism receiving its
services. DDS notes who is eligible for services and has begun tracking the number of people
(including those with autism) who are found ineligible for services. Because each state agency
maintains different criteria for collecting data, it is unfeasible to calculate a reliable number of
people with autism utilizing state services in Massachusetts.
State agencies also struggle to find a balance between acquiring comprehensive and accurate
data on the autism population while maintaining confidentiality of the individuals receiving
services from state agencies. Federal regulations also make it difficult to share data between state
agencies and create a comprehensive data collection system. The current lack of an organized
data system makes it difficult to fully address urgent and critical planning and policy issues that
concern the future of the autism population.
Recommendations
Entity Responsible: Executive Office of Health and Human Services (“EOHHS”)
A) EOHHS will inventory current data tracking systems at DDS, DPH, DESE, EEC and
MassHealth and review data tracking models in other states.25 EOHHS will make
recommendations to the Autism Commission to improve data collection in Massachusetts,
and a plan will be developed for tracking data on the autism population while protecting
the population’s confidentiality. Short-term
B) EOHHS will establish and manage an integrated confidential data system among state
agencies and stakeholders to track diagnosis, treatment, services and outcomes of
individuals with autism in order to improve coordination of care and to disseminate
information. Short-term; Legislation needs to be drafted
25 New Jersey has developed an Autism Registry which takes steps to protect privacy and confidentiality but it does not include information on individuals with autism over
age 22.
22 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority
#7
Improve access to autism screening, diagnosis, and Autism Specialty Services through Early
Intervention for children diagnosed with autism and those considered at high risk for autism.
Findings
The American Academy of Pediatrics (“AAP”) recommends all pediatricians screen infants for signs
of autism with standardized instruments at the 18 and 24 month well baby visits.26 Two of the
barriers that are impeding the pediatric community from implementing the AAP’s standardized
autism screening at every 18 and 24 month visit are time limitations and reimbursement rates that
fail to cover the cost of the screening.27 The shortage of diagnosticians delays follow-up care for
children who have an initial positive screening for autism.28 This is a major barrier to obtaining
time sensitive treatment such as Early Intervention through DPH.
The DPH’s Early Intervention program offers a robust set of services to children under the age
of three. Children diagnosed with autism are automatically eligible for EI services. Children who
exhibit some of the signs of autism but do not have a formal autism diagnosis may be eligible for
EI services. Only children with an autism spectrum diagnosis confirmed by a physician or licensed
psychologist are eligible for EI’s Autism Specialty Services. The average age children receive an
autism diagnosis while enrolled in the EI program is 25.6 months. As a result of the delay in
obtaining a formal autism diagnosis, many children do not receive Autism Specialty Services,
which terminate at age 3.
““C” was diagnosed with PDD-NOS at 19 months and was prescribed 25-30 hours of behavioral
therapy. We interviewed numerous therapy providers, and settled on a reputable provider, who
offered just 10 hours per week of therapy. The weeks and months slipped by, “C” was getting older
but his autism remained the same. At 22 months old, “C” started 28 hours per week of ABA therapy
through a different home-based program. He made incredible progress. He began responding to his
name and began to speak.”
Parent of an 11 year old with Autism, Brookline, MA
Recommendations
Entity responsible: DPH; MassHealth; DDS
A) If a child is exhibiting symptoms of autism but does not have an autism diagnosis, EI will
provide some Autism Specialty Services to the child. Medium-term
B) DPH will require medical professionals to follow AAP and Centers for Disease Control
and Prevention’s recommendations (CDC) to screen all children for developmental delays
at 9, 18, 24 and 30 months. In addition, all children will be given a standardized autism
screening at 18 and 24 months.29 Medium-term; Educate Medical Providers
26 Early Intervention (“EI”)American Academy Pediatrics “APA Recommends Autism Screening for All Infants”. (2007, Oct 30). Available at www.medscape.org
27 Center for Disease Control and Prevention CDC 24/7: (2012). “Autism A.L.A.R.M. Guidelines.” Available at www.cde.gov/nbddd/autism/htp-recommendations/html
28 Lipkin P., “Efforts must continue to improve screening rates, payment”, (2011, Aug 11). AAP News, Vo 32. No. 8. Available at www.aapnews.org
29 MassHealth through the Children’s Behavioral Health Initiative requires medical professionals to use a behavioral health screening tool to check the child’s behavioral
health. Following this example, MassHealth will require all medical professionals in MA to screen for autism.
23 2013 | Report from the Governor’s Special Commission Relative to Autism
C) DPH, DDS, EEC, and DESE will continue to support and partner with the MA Act Early
program’s efforts to increase the availability of clinicians who are trained to provide
comprehensive evaluations of young children at risk for autism. Short-term
D) DPH shall continue to support MA Act Early program’s efforts to create culturally
competent screening protocols and kits for community health centers, pediatric practices,
and other clinicians in languages other than English. Short-term
E)
DPH, in partnership with MA Act Early, MCAAP, Mass League of Community Health
Centers, MA Medical Schools, MA Neuropsychology Society (MNS), and MA Psychological
Association (MPA), and other related associations shall develop a coordinated plan aimed
at increasing the availability of clinicians who are trained to provide comprehensive
evaluations of young children at risk for autism. Medium-term
Priority
#8
Increase employment opportunities for individuals with autism by providing a range of job
training, job development, and employment opportunities.
Findings
MRC’s federally-funded Vocational Rehabilitation (“VR”) Services are designed as short-term
methods of assistance that help individuals locate employment. These services are terminated 90
days after an individual’s employment starts. Many individuals in the autism community require
long-term (post-employment) support to have a successful employment experience; often these
individuals are able to find employment but have difficulty maintaining a job. They may require
specialized training in related areas, such as, social awareness and basic living skills. Federally-
funded VR services, as currently designed, do not meet the needs of many people in the autism
community.
By comparison, MRC’s state funded Supported Employment Supports program provides
job coaching and longer-term job supports. State funding for this program is limited and is
insufficient to meet the needs of the growing population of adults with autism. In addition,
despite admirable efforts by MRC to increase staff awareness and training, there is, nonetheless,
a shortage of well-trained job coaches available to assist adults with autism seeking employment,
as well as those already employed. According to MRC, “The steady increase in enrollment
of consumers on the spectrum pushes the need for access to specialized consultants to assist
counselors and program coordinators in assessing functional abilities and program-specific
questions related to the Autism diagnosis.” This lack of awareness also extends to the employer
community (including state agencies). Many employers are ignorant about the special skills
that employees with autism can bring to the workforce if they are placed in jobs for which
they are suited and given an autism-friendly environment. This results in a shortage of suitable
employment opportunities.
Transition services often fall short of meeting the needs of students with autism who need
specialized guidance to help them choose educational, employment, and housing options that
will provide a higher likelihood of success. MRC has established a Memorandum of Understanding
with DDS to begin the process of increasing long-term supports for the intellectual disability/
developmental disability populations who are transitioning from school to DDS and who would
benefit from extended periods of support where MRC will train and place individuals into
integrated competitive employment. DDS will provide the funding for ongoing supports.
24 Report from the Governor’s Special Commission Relative to Autism | 2013
“I qualify for Mass Rehab based on my disability, but the people there have basically said that they
cannot help me as I am too high-functioning. They say that I interview well, that I present nicely, and
am very qualified, but they don’t know why employers never hire me, even after multiple interviews.
I don’t know, either – that’s why I need help.”
Individual with Autism, age 28, Arlington, MA
“Our son is now in his own apartment and a few courses away from getting his four year degree. All
those accomplishments started with those first steps with Mass Rehab and he would not be where he
is today without their support.”
Parent of a 26 year old with Autism, Shrewsbury, MA
Recommendations
Entity Responsible: MRC; EOHHS
A) MRC will collect, monitor, and analyze data from the Social Security Administration (SSA)
and report data regarding the outcomes and ongoing status of the disability claims for
SSDI and SSI to the Autism Commission. Short-term
B) MRC shall analyze and report data to the Autism Commission concerning the
approximately 20,000 individuals who receive MRC services each year including number of
individuals with autism served. Short-term
C) MRC shall expand upon existing staff training initiatives on autism to ensure that all staff
are competent in addressing the needs of this population. Short-term
D) MRC shall seek funding to increase the number of job coaches employed by MRC and
continue to increase collaboration with other disability agencies to expand supported
employment options, and ensure that providers receive specialized training in how to meet
the needs of adults with autism. Medium-term
E)
Increase funding for MRC’s Supported Employment Supports program. MRC will also
explore and identify options for making available on-going employment supports to
those consumers with autism who require them, including broadening the MRC/DDS
Memorandum of Understanding to include consumers with autism. Medium-term;
increased funding
F)
MRC shall also reach out to private non-profits, such as Asperger’s Association of New
England, to help fund coaching programs (such as AANE’s LifeMAP Program), so that wider
access can be provided to people who cannot afford to pay fees for such services. Medium-
term; increased funding
G) MRC shall continue to work with AANE, and other providers, to establish one or more
employment pilot programs dedicated to connecting adults with autism with employment
opportunities.30 Medium-term; increased funding
30 Successful models that might be emulated are the Aspiritech company and the Autistic Self-Advocacy Network’s work with federal agencies seeking to enhance the
diversity of their workforce
25 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority
#9
Increasing capacity to provide educational supports and services necessary to meet the needs
of all students with autism
Findings
The number of students with autism between the ages of 3 and 22 educated in Commonwealth
schools increased 170% between FY 2003 and FY 2011.31 This was the largest increase for any
disability category during the same timeframe. School systems across the state struggle to develop
programs and services to respond to the substantial increase in the number of students diagnosed
with autism seeking educational services required under special education laws.The growing
numbers of students with autism appear to be outpacing capacity, including the development of
programs and the preparation of personnel experienced in the area of autism.
“I actually kept my son out of school another year so he could continue with ABA therapy at home
because there was no one in the school that had ever been trained in ABA. I had to leave work and
get a part-time job so I could work with my son and his therapists. It was a financial struggle working
only part-time and paying for professional advocates to make sure my child received the services, that
by law, I should not have to fight for.”
Parent of a 6 year old with Autism, Danvers, MA
Although state and federal laws (including the Autism IEP Act) require school districts to provide
appropriate services/programs for the burgeoning numbers of students with autism, the state
system to monitor and ensure compliance with these laws is inadequate due in part to lack of
resources and structural capacity. As a result, students with autism often do not receive necessary
special education services and programs There is wide disparity in the availability of appropriate
educational services available for students with autism across the Commonwealth. For example,
there is a growing need to address cultural and linguistic barriers faced by the increasing numbers
of individuals with autism from immigrant communities. Older youth with autism ages 14-22
frequently do not receive the assessments and services needed to successfully transition to further
education, employment, and independent living when they exit special education. Many youth
with autism require instruction in the community to learn independent travel, communication,
employment and daily living skills necessary to succeed.
Public higher education institutions also reported an increase in enrollment of students with
autism between academic years 2004-2005 and 2009-2010.32 Students with autism pursuing
higher education require a different level of services than students with other disabilities.33 For
example, supports focused on improving and expanding means of social communication are
not traditionally provided as a part of disability services in higher education, yet these services
would benefit many students with autism. Faculty at institutions of higher education may lack
information about and experience in teaching individuals with autism. Students transitioning to
higher education campuses are often ill-prepared for self-advocacy in this environment and do
not know how to access disability services. Meanwhile, limited available state and federal funding
for public higher education campuses makes expanding resources for students with autism
difficult.
31 Data is from the Department of Elementary and Secondary Education.
32 Autism Commission Report-State Agency Section Department of Higher Education, Data was collected via online questionnaires in spring 2011; questionnaires were
completed by each responding institution’s disability services director or similar position. This information should be considered anecdotal.
33 Autism Commission Report-State Agency Section Department of Higher Education
26 Report from the Governor’s Special Commission Relative to Autism | 2013
The Commission has developed a comprehensive set of education recommendations, in
recognition of the fact that the education system has a broad and inclusive mandate, as the only
public entity that serves all individuals with autism, ages 3-22. It is critical to build the capacity of
the Commonwealth’s school systems, increasing funding, infrastructure, and expertise needed to
meet the complex needs of students with autism.
“The classroom aide he had in first and second grade was critical to his development of appropriate
classroom behaviors. He was pulled out for speech, but this really was an opportunity for social skills
development. I also believe he was fortunate to have some truly exceptional teachers, who were able
to look beyond his disability and see the endearing aspects of his personality.”
Parent of a 17 year old with Autism, suburb of Boston
Recommendations
Entities Responsible: DESE; DHE; State Legislature
A) DESE shall hire autism specialists who will help ensure the state’s policies and practices
meet the needs of students with autism. Autism specialists will also be available to provide
technical assistance to local education agencies to aid in the development of appropriate
programs for students with autism which educate students in a manner consistent with
their potential and in the least restrictive environment. Medium-term
B) DESE will develop and implement a state Autism Discretionary Grant Program for local
school districts to increase their capacity to educate students with autism in a manner
consistent with their potential and in the least restrictive environment. Medium-term
C) DESE will take steps to ensure that school districts have access to the number of
appropriately qualified interpreters and translators necessary to provide communications
in parents’ primary languages. Medium-term
D) DESE will fund pilot programs for school districts working in partnership with community
organizations throughout the Commonwealth to demonstrate best practices to overcome
cultural and linguistic barriers faced by parents and children with autism. Medium-term
E)
DESE will develop a competency based Autism Endorsement for licensed teachers so that
teachers can obtain competencies necessary to educate students with autism in a manner
consistent with their potential in the least restrictive environment. Short-term
F)
DESE will take steps necessary to ensure that school districts provide the range of special
education transition services necessary to promote employment, higher education, and
independent living success for youth with autism by utilizing necessary community-
based education and integrated paid employment experiences (including supportive
employment) that specifically address social, communication, behavioral, academic,
functional, independent living, and self-determination skills. To accomplish this, DESE will:
(i)
require that the new transition specialist endorsement competencies include
experience working with youth and adults with autism. Short-term
(ii)
work with autism experts to establish best practice guidelines for providing
transition assessments based on the National Secondary Transition Technical
Assistance Center (NSTACC) and DESE shall conduct professional development
necessary to establish a pool of transition evaluators with autism-specific
expertise. Short-term
(iii)
develop an IEP model form for transition age youth that addresses the unique and
complex needs of youth with autism. Short-term
27 2013 | Report from the Governor’s Special Commission Relative to Autism
(iv)
support development of model transition practices which successfully promote
employment, further education, and independent living Short-term
(v)
improve state monitoring of transition requirements of special education law
pursuant to recommendation G below. Short-term
G) DESE will develop a more responsive and effective system for state monitoring of
compliance with requirements of special education laws, including an improved system for
conducting coordinated program reviews and responding to individual complaints. It will
also create a data tracking system which will enable it to compile statistics on:
(i)
the number of individual complaints filed by families of children with autism;
(ii)
the number of BSEA hearing requests involving students with autism, identifying
the town and age of the student;
(iii)
BSEA decisions pertaining to students with autism;
(iv)
findings from Coordinated Program Reviews that are relevant to students with
autism.
DESE and the Division of Administrative Law Appeals shall amend their memorandum of
understanding to the extent necessary for BSEA to furnish DESE with the data required
in (ii) and (iii) above. DESE will file a bi-annual report detailing these findings with the
Autism Commission and the Joint Committee on Education. Short-term
H) Change special education law and practice to require that a professional with the new
state autism endorsement participates in the IEP Team meetings of all students with
autism. Long-term
I) Increase state funding for disability services at Community Colleges. Short-term
J)
DESE and DHE shall work together to expand the Inclusive Concurrent Enrollment program
to all colleges in the Commonwealth to increase opportunities to meet the needs of
transition age youth with autism, including expansion to support inclusion in resident life
(dormitory) of the college. Medium-term; financial resources
K) Higher education institutions will design innovative services, supports and programming,
based upon current research and best practices in the field of disability services and autism
studies, for students with autism. Medium-term
Priority
#10
Increasing availability of augmentative and alternative communication methods, devices and
services for individuals with autism
Findings
Approximately 50% of individuals with autism are nonverbal or have limited speech. Federal and
state special education laws require school districts to provide assistive communication technology
necessary for students who are nonverbal or who have limited speech to receive an appropriate
education. In many instances, Augmentative and Alternative Communication technology remains
unavailable to children with autism, either because school districts lack expertise and resources to
support appropriate assistive technology or students are not referred to appropriate specialists.
Many adults with autism are also unable to access the AAC evaluations and devices essential to
communicate. This has an impact on educational progress, health care attainment, employment
and housing options, quality of life, and may increase behavioral difficulties.
28 Report from the Governor’s Special Commission Relative to Autism | 2013
“For years, my life was in silence. I was unable to communicate with people. I had my first steps but
not my first words. It was very hard for me to get through life as a child but when I taught myself
how to read, life began for me.”
Individual with Autism, age 26, Hyde Park, MA
Recommendations
Entity Responsible: State Legislature, MassHealth, MRC, DDS, DESE
A) Increase funding for MRC’s Assistive Technology Regional Centers, in partnership with
Institutes of Higher Education where appropriate, in order to enhance their ability to
provide the training and courses on assistive technology to general and special educators,
speech and language pathologists, paraprofessionals, parents, and other service providers
in school districts in order to increase the school’s capacity to refer, assess, and provide
required AAC /assistive technology appropriate to meet the needs of children with autism
who are nonverbal or have limited speech. Ensure the delivery in a variety of formats to
meet the greatest number of people possible: online, video, in person, group trainings,
etc. as well as ongoing individual support. Medium-term; increase funding
B)
Establish one or more additional Assistive Technology Regional Centers in other areas of
the state and fund one or more mobile Assistive Technology Regional Centers. Medium-
term; increased funding
C) Increase funding for DDS’s AT Centers across the state in order to increase the capacity
of these centers to match individuals who need assistive technology with the proper
equipment. Medium-term; increased funding
D) Revise the Massachusetts education licensure regulations to require that general education
teachers and specialists receive sufficient coursework and practical experience in methods
of augmentative and alternative communication to facilitate interaction of students
with autism that are nonverbal or have limited speech, to ensure access to the general
education curriculum, and to facilitate inclusion. Short-term
E)
Revise Massachusetts education licensure regulations to require that all teachers address
use of assistive technology and augmentative and alternative communication for students
who are nonverbal or who have limited speech as a requirement for recertification,
incorporating this requirement in educator’s required individual professional development
plan. Short-term
Increasing the range of housing options for individuals with autism.Priority
#11
Findings
Except in those instances when individuals are prioritized for housing, adults with autism and
their families are largely responsible for locating and financing their own housing. Some adults
with autism can live alone, but most independent housing that is available to adults is built
and maintained by the private sector making it difficult for individuals with autism to be able
to afford housing. Individuals, who meet the income criteria, may apply for federally funded
housing assistance programs, like the Section 8 voucher program. Unfortunately, Section 8 income
limits prohibit many adults with autism who are successfully employed from receiving financial
assistance for housing. This presents a dilemma for some individuals with autism who, despite
being employed, may continue to struggle to afford housing.
29 2013 | Report from the Governor’s Special Commission Relative to Autism
Housing capacity in existing programs is outstripped by demand. For those who are eligible for a
Section 8 voucher, many spend years on waiting lists until vouchers become available. In addition,
many adults with autism who are DDS eligible may not be prioritized for this level of service and
do not receive such a placement until there is a family crisis. This can result in a sudden, traumatic
change in living situation, with a loss of community ties and supports. The Commission has also
heard testimony, which is corroborated by the personal knowledge of many of its members,
from parents of adult children with autism who continue to live at home, under the care of their
parents. These parents, many of whom are elderly, have few options for future housing and
support, when they will be unable to care for their children. There is also an unknown backlog of
people who would apply for aid if relevant programs existed. Lastly, the shortage of emergency
housing for the general population affects individuals with autism-those with autism not eligible
for services that do not have the support of family or loved ones are at a high risk for becoming
homeless.
“S.G.’s father, who was considerably older than his wife, felt that an out of home placement was
more and more essential. S.G.’s mother was increasingly afraid to be alone with her son, and they
themselves were becoming symptomatic. They wanted to seek supervised therapeutic housing for
their son, and wanted help in setting up a professional team that could support S.G and customize his
needs. They found they could not afford to pay for private subsidized programming, even if S.G. were
stable enough to enroll.”
Professional, Metro Boston area
Recommendations
Entity Responsible: State legislature; DHCD
A) The State Legislature will amend M.G.L. Chapter 40B (affordable housing) to redefine
housing for low-income people with disabilities to count as affordable housing, with
each bedroom in a multi-residential house counting as one affordable unit. Short-term;
Legislature
B) Increase funding for MRC’s MassAccess website to ensure individuals with disabilities
including adults with autism can continue to access current information on affordable and
accessible housing available in Massachusetts. Short-term
C) The DHCD will develop a formal, statewide housing policy to establish priorities for
individuals with autism. Short-term
D) The Interagency Council on Housing and Homelessness will work with DHCD and assist
them in determining how to effectively serve adults with autism who are at risk for
homelessness. Short-term
30 Report from the Governor’s Special Commission Relative to Autism | 2013
Improve the Delivery of Healthcare Services for Individuals with Autism.Priority
#12
Improve the Delivery of Healthcare Services for Individuals with Autism.Priority
#12
Findings
Individuals with autism are prone to a number of health complications including but not
limited to musculoskeletal problems, gastro-intestinal issues, increased incidence of allergies/
sensitivity to certain foods and increased chances of epilepsy.34 Depending on the range of
health complications an individual may need to see several doctors in order to receive adequate
treatment for his or her medical issues.35
There are many factors that impede this population’s access to appropriate health care and
even when individuals with autism have insurance coverage for medical procedures, they can
sometimes still struggle to receive adequate health care. Barriers to health care are created by
the lack of medical providers knowledgeable about autism and/or lack of specialists available
to diagnose and treat individuals with autism. This is particularly the case for young children
since there is a dearth of diagnosticians which consequently delays formal diagnosis and access
to treatment and services during critical developmental stages. Throughout their lifespan,
miscommunication with the medical professionals can occur. This is especially problematic for
individuals with autism who are unable to effectively communicate with medical professionals
and also individuals who do not speak English.
There are both State and private sector programs in the Commonwealth that are working to
increase access to medical services and the number of providers who are knowledgeable about
autism and other developmental disabilities. Some examples of these programs are Operation
House Call, which is a program offered through the Arc of Massachusetts that focuses on
increasing medical students’ knowledge about people with developmental disabilities and
the Massachusetts Child Psychiatry Access Project, which is designed to assist primary care
providers (PCPs) to meet the needs of children with psychiatric problems. This project provides
an opportunity to better inform primary care providers about children with autism who have cooccurring
psychiatric problems.
Recommendations
Entity Responsible: MassHealth, State Legislature
A) Provide funding to state schools in order to establish the Operation House Call program
as part of the curriculum for medical, nursing, dentistry, physical therapy, occupational
therapy, speech therapy, and other specialty degree programs. Medium-term
B) Expand funding for the Massachusetts Child Psychiatry Access Project to augment autism
expertise within the program. Medium-term
C) Identify medical practitioners across the Commonwealth who have received training and
consider themselves specialists in the healthcare of individuals with autism and develop
specialty provider lists that will be available on the Autism Resource Center websites.
Short-term; increased funding
34 http://www.autismhelp.info/health/health-issues-specific-to-autism/categories, id, 466,1-1.aspx
35 Please see section 4 for information and recommendations on access to health insurance coverage for individuals with autism.
31 2013 | Report from the Governor’s Special Commission Relative to Autism
D) In order to increase the number of medical providers who are knowledgeable in autism
including primary care physicians, nurses, dentists, physical therapists, occupational
therapists, speech therapists, and other specialists, the legislature will establish a fund to
provide scholarships for students attending state schools including state run nursing and
schools of dentistry who are either studying issues related to autism and/or plan to work
with individuals with autism upon graduation. Medium-term; increased funding
E)
Promote additional specialized training on autism through medical continuing education
programs for primary care physicians, neurologists, psychiatrists, dentists, emergency room
personnel and other medical specialists. Short-term
E)
Encourage hospitals to develop an “autism team” who could be called upon should a
patient with autism enter the emergency room, need tests or X-rays, need to be admitted,
etc. This “team” would be knowledgeable about autism and communication difficulties
many people with autism have and could advise MDs and staff how to communicate with
the patient. Short-term
Priority
#13
Assure that the Autism Commission’s recommendations are implemented and outcomes
are monitored for effectiveness.
“We have so much to offer society, IF WE CAN ONLY GET A CHANCE.”
Individual with Autism, age 73, Worcester, MA
Findings
The members of the Autism Commission committed themselves to developing comprehensive
recommendations designed to improve the lives of individuals with autism living in the
Commonwealth. In order to ensure the recommendations fulfill this commitment, members
agreed that the work of the Commission would not end with the filing of the final report. Rather,
it was decided the Commission would continue to meet to both oversee the implementation of
the Commission’s final recommendations and discuss any other issues that are facing the autism
community in Massachusetts.
Recommendation
A) The Autism Commission will continue to meet and be responsible for overseeing the
implementation of the Commission’s recommendations and analyzing issues facing the
autism community not discussed in the report. Short-term; Legislation
32 Report from the Governor’s Special Commission Relative to Autism | 2013
vi imPLEmENTATiON ChArT36 vi imPLEmENTATiON ChArT36
36 Some of the recommendations were abbreviated to fit the chart format.
33 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority Recommendations
Entity(ies)
Responsible
Required for
Implementation
Legislation
Filed
State Budget
Line Item
Timeline
#1
A) DDS will no longer use
an IQ-based eligibility
requirement for adult
services.
DDS; State
Legislature
Change DDS
statute and
Regulations;
Increase DDS
resources
HD 2945
Rep. Bradley
SD 777
Sen.
Flanagan
5911-1003
(DDS Service
Coordination,
Admin.)
Short-term
1/1/13 to
12/31/14
B) On a quarterly basis,
DDS will report to the
Autism Commission the
number of individuals with
autism applying for services
who are found to be
ineligible.
Short-term
1/1/13 to
12/31/14
#2
A) Primary diagnosis of autism
will not be used as grounds
to find an adult ineligible for
DMH services.
State
Legislature
Change DMH
statute and
Regulations;
Increase DMH
resources
HD 1658
Rep. Khan
SD 781
Sen.
Flanagan
5042-5000
(DMH child
and adolescent
services); 5046-
0000 (DMH
Adult Services)
Short-term
1/1/13 to
12/31/14
B) On a quarterly basis, DMH
will report to the Autism
Commission the number
of individuals with autism
applying for services who
are found to be ineligible.
DMH
Short-term
1/1/13 to
12/31/14
C) DMH will increase its level
of clinical expertise on
the treatment needs of
individuals with co-occurring
mental illness and autism.
DMH; DDS
Short-term
1/1/13 to
12/31/14
D) DMH will develop more
services that are aimed
at meeting the needs of
individuals with autism
and co-occurring mental
illnesses.
EOHHS
Medium-term
1/1/15 to
12/31/16
34
Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#3
Children’s
Autism
Waiver
A) Increase the appropriation
for the Children's Autism
Waiver Program.
State
Legislature
Funding Increased 5920-3010 (DDS
Autism) Short-term
1/1/13 to
12/31/14
B) Amend the Waiver and
initially expand the number
of children (ages birth
through age 8) served from
157 to 500…
State
Legislature
Funding Increased 5920-3010 (DDS
Autism) Short-term
1/1/13 to
12/31/14
C) Designate at least two
enrollment periods per year
to allow parents to plan
accordingly.
DDS
Short-term
1/1/13 to
12/31/14
D) When the Autism Waiver
is renewed in two years,
DDS will expand the Waiver
to create Waiver Services
for children ages 9-22.
For this older cohort, the
Commission recommends
that the waiver offer a broad
array of flexible in-home and
out-of-home services...
DDS; State
Legislature
Funding Increased HD 2883
Rep. Bradley
5920-3010 (DDS
Autism)
Medium-term
1/1/15 to
12/31/16
#3
Adult
Waiver
A) Assuming expanded
eligibility will be
implemented, it will be
necessary to increase the
number of waiver slots to
ensure waiver services for
those newly eligible.
State
Legislature
Funding Increased
Short-term
1/1/13 to
12/31/14
B) Provide intensive case
management by adding a
group of trained workers
with extensive autism
experience to assist with
development of individual
support plan.
DDS Funding Increased 5920-2000
(DDS
Community
Residential)
Long-term
1/1/17 to
12/31/18
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#3
Children’s
Autism
Waiver
A) Increase the appropriation
for the Children's Autism
Waiver Program.
State
Legislature
Funding Increased 5920-3010 (DDS
Autism) Short-term
1/1/13 to
12/31/14
B) Amend the Waiver and
initially expand the number
of children (ages birth
through age 8) served from
157 to 500…
State
Legislature
Funding Increased 5920-3010 (DDS
Autism) Short-term
1/1/13 to
12/31/14
C) Designate at least two
enrollment periods per year
to allow parents to plan
accordingly.
DDS
Short-term
1/1/13 to
12/31/14
D) When the Autism Waiver
is renewed in two years,
DDS will expand the Waiver
to create Waiver Services
for children ages 9-22.
For this older cohort, the
Commission recommends
that the waiver offer a broad
array of flexible in-home and
out-of-home services...
DDS; State
Legislature
Funding Increased HD 2883
Rep. Bradley
5920-3010 (DDS
Autism)
Medium-term
1/1/15 to
12/31/16
#3
Adult
Waiver
A) Assuming expanded
eligibility will be
implemented, it will be
necessary to increase the
number of waiver slots to
ensure waiver services for
those newly eligible.
State
Legislature
Funding Increased
Short-term
1/1/13 to
12/31/14
B) Provide intensive case
management by adding a
group of trained workers
with extensive autism
experience to assist with
development of individual
support plan.
DDS Funding Increased 5920-2000
(DDS
Community
Residential)
Long-term
1/1/17 to
12/31/18
35 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#3
Adult
Waiver
(cont.)
C) Increase the availability
and expertise of Behavior
Support Consultation for
DDS eligible adults.
DDS Funding Increased 5920-2000 (DDS
Community
Residential)
Medium-term
1/1/15 to
12/31/16
D) Expand and develop
additional specialty day
and employment programs
tailored to meet the needs
of adults with autism,
including those with severe
challenging behaviors.
DDS Funding Increased;
Organizational
Changes; Research
and Development
Long-term
1/1/17 to
12/31/18
E) Direct transition coordinators
in school districts to provide
written information to
families of students with
autism transitioning into
adult services about the
availability of the three adult
waivers.
DDS
Short-term
1/1/13 to
12/31/14
#3
DESE/DDS
Program
A) Since there is currently no
wait list, DDS will initiate
a new application process
and expand the number of
slots available for students
requiring these services.
DDS
Short-term
1/1/13 to
12/31/14
B) Increase funding for the DDS/
DESE program in order to
serve more individuals in this
program.
State
Legislature
Increased Funding
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#3
Adult
Waiver
(cont.)
C) Increase the availability
and expertise of Behavior
Support Consultation for
DDS eligible adults.
DDS Funding Increased 5920-2000 (DDS
Community
Residential)
Medium-term
1/1/15 to
12/31/16
D) Expand and develop
additional specialty day
and employment programs
tailored to meet the needs
of adults with autism,
including those with severe
challenging behaviors.
DDS Funding Increased;
Organizational
Changes; Research
and Development
Long-term
1/1/17 to
12/31/18
E) Direct transition coordinators
in school districts to provide
written information to
families of students with
autism transitioning into
adult services about the
availability of the three adult
waivers.
DDS
Short-term
1/1/13 to
12/31/14
#3
DESE/DDS
Program
A) Since there is currently no
wait list, DDS will initiate
a new application process
and expand the number of
slots available for students
requiring these services.
DDS
Short-term
1/1/13 to
12/31/14
B) Increase funding for the DDS/
DESE program in order to
serve more individuals in this
program.
State
Legislature
Increased Funding
Short-term
1/1/13 to
12/31/14
36 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#4
Private insurance
A) EOHHS will reach out to
large self-funded employers
to educate them about the
insurance law.
EOHHS
Short-term
1/1/13 to
12/31/14
Private insurance
B) EOHHS and DOI will
explore ways to recoup
from self-funded employers
the additional direct costs
incurred by the State due to
lack of coverage for autism
treatment.
EOHHS; DOI
Short-term
1/1/13 to
12/31/14
mass health
C) Require Mass Health to
take action necessary to
cover medically necessary
treatments for individuals
with autism.
Mass
Health; State
Legislature
Legislation HD 1780
Rep. Gregoire
HD 2871
Rep. Bradley
Medium-term
1/1/15 to
12/31/16
mass health
D) Require Mass Health
to revise regulations to
cover both dedicated
and non-dedicated (e.g.,
tablets), for people who
require Augmentative and
Alternative Communication.
Mass Health Update
Regulations
Short-term
1/1/13 to
12/31/14
Early Intervention
E) To assist families
transitioning from EI to
utilize all their available
resources, EI will train
their staff about the autism
insurance law, and develop
tools to help staff and
families navigate insurance
options for behavioral
treatments after age 3.
DPH
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#4
Private insurance
A) EOHHS will reach out to
large self-funded employers
to educate them about the
insurance law.
EOHHS
Short-term
1/1/13 to
12/31/14
Private insurance
B) EOHHS and DOI will
explore ways to recoup
from self-funded employers
the additional direct costs
incurred by the State due to
lack of coverage for autism
treatment.
EOHHS; DOI
Short-term
1/1/13 to
12/31/14
mass health
C) Require Mass Health to
take action necessary to
cover medically necessary
treatments for individuals
with autism.
Mass
Health; State
Legislature
Legislation HD 1780
Rep. Gregoire
HD 2871
Rep. Bradley
Medium-term
1/1/15 to
12/31/16
mass health
D) Require Mass Health
to revise regulations to
cover both dedicated
and non-dedicated (e.g.,
tablets), for people who
require Augmentative and
Alternative Communication.
Mass Health Update
Regulations
Short-term
1/1/13 to
12/31/14
Early Intervention
E) To assist families
transitioning from EI to
utilize all their available
resources, EI will train
their staff about the autism
insurance law, and develop
tools to help staff and
families navigate insurance
options for behavioral
treatments after age 3.
DPH
Short-term
1/1/13 to
12/31/14
37 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#5
A) EOHHS will designate DDS’s
Division of Autism as the
single agency dedicated as
a source of information and
referral for individuals with
autism throughout their lives.
EOHHS; DDS DDS
Organizational
Change; Increased
funding
5920-3010 (DDS
Autism) Medium-term
1/1/15 to
12/31/16
B) funding for the Autism
Support Centers will
be increased to ensure
consistency of the Centers’
quality of services and
information and to prepare
the Centers to serve
individuals of all ages.
DDS Increased funding 5920-3010 (DDS
Autism)
Medium-term
1/1/15 to
12/31/16
C) The Division of Autism
with support from EOHHS
will create a website and
telephone number mirroring
1-800-AGE-INFO.
Division of
Autism (DDS);
EOHHS
Increased funding
Medium-term
1/1/15 to
12/31/16
D) EOHHS shall form an inter-
agency/inter-department
committee amongst DCF,
DPH, DDS, MRC, LTSS, DMH
and DESE to develop policies
to better coordinate overall
services and improve cross-
agency and cross-Secretariat
communication.
EOHHS
Short-term
1/1/13 to
12/31/14
E) DDS shall promulgate
regulations to change how
case management services
are delivered to adults with
autism who are eligible for
DDS by using the Children’s
Autism Waiver as the model
for adult case management
EOHHS; DDS Regulations
changes;
Organizational
Changes; Funding
increased
5911-1003
(DDS Service
Coordination,
Admin.)
Long-term
1/1/17 to
12/31/18
F) DDS will increase cross-
agency training and technical
assistance efforts so that the
state workforce has a better
understanding of the needs
of adults with autism.
DDS
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#5
A) EOHHS will designate DDS’s
Division of Autism as the
single agency dedicated as
a source of information and
referral for individuals with
autism throughout their lives.
EOHHS; DDS DDS
Organizational
Change; Increased
funding
5920-3010 (DDS
Autism) Medium-term
1/1/15 to
12/31/16
B) funding for the Autism
Support Centers will
be increased to ensure
consistency of the Centers’
quality of services and
information and to prepare
the Centers to serve
individuals of all ages.
DDS Increased funding 5920-3010 (DDS
Autism)
Medium-term
1/1/15 to
12/31/16
C) The Division of Autism
with support from EOHHS
will create a website and
telephone number mirroring
1-800-AGE-INFO.
Division of
Autism (DDS);
EOHHS
Increased funding
Medium-term
1/1/15 to
12/31/16
D) EOHHS shall form an inter-
agency/inter-department
committee amongst DCF,
DPH, DDS, MRC, LTSS, DMH
and DESE to develop policies
to better coordinate overall
services and improve cross-
agency and cross-Secretariat
communication.
EOHHS
Short-term
1/1/13 to
12/31/14
E) DDS shall promulgate
regulations to change how
case management services
are delivered to adults with
autism who are eligible for
DDS by using the Children’s
Autism Waiver as the model
for adult case management
EOHHS; DDS Regulations
changes;
Organizational
Changes; Funding
increased
5911-1003
(DDS Service
Coordination,
Admin.)
Long-term
1/1/17 to
12/31/18
F) DDS will increase cross-
agency training and technical
assistance efforts so that the
state workforce has a better
understanding of the needs
of adults with autism.
DDS
Short-term
1/1/13 to
12/31/14
38 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#5
(cont.)
G) Increase DDS’s funding for
family support programs.
State
Legislature
Increased funding 5920-3000 (DDS
Family Services)
Short-term
1/1/13 to
12/31/14
H) Autism Division and Autism
Clinical Managers will
work with paraprofessional
training programs to develop
a program to train people
to work as direct support
providers for people with
autism.
DDS
Medium-term
1/1/15
to12/31/16
I) Autism Division and Autism
Clinical Managers will create
paraprofessional training
for direct support providers
program in school districts,
community colleges and
vocational high schools.
Autism
Division Medium-
term 1/1/15
to 12/31/16
Update
Regulations
J) Revise MassHealth
regulations to broaden Adult
Foster Care and Personal
Care Assistant (“PCA”)
services to better meet the
needs of individuals with
autism and expand access
to respite care for families of
adults with autism.
MassHealth Update
Regulations
Short-term
1/1/13 to
12/31/14
K) DDS will examine current
staffing credentials, staffing
levels at group homes,
and supportive living
arrangements for adults
with autism...
DDS
Short-term
1/1/13 to
12/31/14
L) Autism Division will establish
and maintain a database of
institutions offering courses,
certifications and degree
programs in autism and
autism related fields…
Autism
Division
Medium-term
1/1/15 to
12/31/16
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#5
(cont.)
G) Increase DDS’s funding for
family support programs.
State
Legislature
Increased funding 5920-3000 (DDS
Family Services)
Short-term
1/1/13 to
12/31/14
H) Autism Division and Autism
Clinical Managers will
work with paraprofessional
training programs to develop
a program to train people
to work as direct support
providers for people with
autism.
DDS
Medium-term
1/1/15
to12/31/16
I) Autism Division and Autism
Clinical Managers will create
paraprofessional training
for direct support providers
program in school districts,
community colleges and
vocational high schools.
Autism
Division Medium-
term 1/1/15
to 12/31/16
Update
Regulations
J) Revise MassHealth
regulations to broaden Adult
Foster Care and Personal
Care Assistant (“PCA”)
services to better meet the
needs of individuals with
autism and expand access
to respite care for families of
adults with autism.
MassHealth Update
Regulations
Short-term
1/1/13 to
12/31/14
K) DDS will examine current
staffing credentials, staffing
levels at group homes,
and supportive living
arrangements for adults
with autism...
DDS
Short-term
1/1/13 to
12/31/14
L) Autism Division will establish
and maintain a database of
institutions offering courses,
certifications and degree
programs in autism and
autism related fields…
Autism
Division
Medium-term
1/1/15 to
12/31/16
39 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#6
A) EOHHS will make
recommend-ations to the
Autism Commission for
overcoming data collection
issues in Massachusetts.
Short-term
1/1/13 to
12/31/14
B) EOHHS will establish and
manage an integrated
confidential data system
among state agencies and
stakeholders.
EOHHS;State
Legislature
Funding to initiate
data collection;
legislation
HD 2874
Rep. Bradley Short-term
1/1/13 to
12/31/14
#7
A) If a child is exhibiting
symptoms of autism but
does not have an autism
diagnosis, EI will provide
some Autism Specialty
Services to the child.
DPH Increased Funding 4513-1020
(DPH Early
Intervention) Medium-term
1/1/15 to
12/31/16
B) DPH will require medical
professionals to follow AAP
and Centers for Disease
Control and Prevention’s
recommendations (CDC)
to screen all children for
developmental delays.
DPH Awareness
Campaign
Medium-term
1/1/15 to
12/31/16
C) DPH, DDS, EEC, and DESE
will continue to support and
partner with the MA Act
Early program’s efforts to
increase the availability of
clinicians who are trained
to provide comprehensive
evaluations of young
children at risk for autism.
DPH; DDS
Short-term
1/1/13 to
12/31/14
D) DPH shall continue to
support MA Act Early
program’s efforts to create
culturally competent
screening protocols and
kits for community health
centers, pediatric practices,
and other clinicians in
language other than English.
DPH
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#6
A) EOHHS will make
recommend-ations to the
Autism Commission for
overcoming data collection
issues in Massachusetts.
Short-term
1/1/13 to
12/31/14
B) EOHHS will establish and
manage an integrated
confidential data system
among state agencies and
stakeholders.
EOHHS;State
Legislature
Funding to initiate
data collection;
legislation
HD 2874
Rep. Bradley Short-term
1/1/13 to
12/31/14
#7
A) If a child is exhibiting
symptoms of autism but
does not have an autism
diagnosis, EI will provide
some Autism Specialty
Services to the child.
DPH Increased Funding 4513-1020
(DPH Early
Intervention) Medium-term
1/1/15 to
12/31/16
B) DPH will require medical
professionals to follow AAP
and Centers for Disease
Control and Prevention’s
recommendations (CDC)
to screen all children for
developmental delays.
DPH Awareness
Campaign
Medium-term
1/1/15 to
12/31/16
C) DPH, DDS, EEC, and DESE
will continue to support and
partner with the MA Act
Early program’s efforts to
increase the availability of
clinicians who are trained
to provide comprehensive
evaluations of young
children at risk for autism.
DPH; DDS
Short-term
1/1/13 to
12/31/14
D) DPH shall continue to
support MA Act Early
program’s efforts to create
culturally competent
screening protocols and
kits for community health
centers, pediatric practices,
and other clinicians in
language other than English.
DPH
Short-term
1/1/13 to
12/31/14
40 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#7
(cont.)
E) DPH, in partnership
with MA Act Early,
MCAAP, Mass League of
Community Health Centers,
MA Medical Schools,
MA Neuropsychology
Society (MNS), and MA
Psychological Association
(MPA), and other related
associations shall develop a
coordinated plan aimed at
increasing the availability of
clinicians who are trained
to provide comprehensive
evaluations of young
children at risk for autism.
DPH
Medium-term
1/1/15 to
12/31/16
#8
A) MRC will collect, monitor,
and analyze data from
the Social Security
Administration (SSA) and
report data regarding the
outcomes and ongoing
status of the disability
claims for SSDI and SSI to
the Autism Commission.
MRC
Short-term
1/1/13 to
12/31/14
B) MRC shall analyze and
report data to the Autism
Commission concerning
the approximately 20,000
individuals who receive MRC
services each year including
number of individuals with
autism served.
MRC
Short-term
1/1/13 to
12/31/14
C) MRC shall expand upon
existing staff training
initiatives on autism to
ensure that all staff are
competent in addressing the
needs of this population.
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#7
(cont.)
E) DPH, in partnership
with MA Act Early,
MCAAP, Mass League of
Community Health Centers,
MA Medical Schools,
MA Neuropsychology
Society (MNS), and MA
Psychological Association
(MPA), and other related
associations shall develop a
coordinated plan aimed at
increasing the availability of
clinicians who are trained
to provide comprehensive
evaluations of young
children at risk for autism.
DPH
Medium-term
1/1/15 to
12/31/16
#8
A) MRC will collect, monitor,
and analyze data from
the Social Security
Administration (SSA) and
report data regarding the
outcomes and ongoing
status of the disability
claims for SSDI and SSI to
the Autism Commission.
MRC
Short-term
1/1/13 to
12/31/14
B) MRC shall analyze and
report data to the Autism
Commission concerning
the approximately 20,000
individuals who receive MRC
services each year including
number of individuals with
autism served.
MRC
Short-term
1/1/13 to
12/31/14
C) MRC shall expand upon
existing staff training
initiatives on autism to
ensure that all staff are
competent in addressing the
needs of this population.
Short-term
1/1/13 to
12/31/14
41 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#8
(cont.)
D) MRC shall seek funding to
increase the number of job
coaches employed by MRC
and continue to increase
collaboration with other
disability agencies.
State
Legislature;
MRC
Increased funding
Medium-term
1/1/15 to
12/31/16
E) Increase funding for MRC’s
Supported Employment
Supports program.
State
Legislature;
MRC
Increased funding Medium-term
1/1/15 to
12/31/16
F) MRC shall also reach out to
private non-profits, such as
Asperger’s Association of
New England, to help fund
coaching programs.
MRC Increased funding
Medium-term
1/1/15 to
12/31/16
G) MRC shall continue to
work with AANE, and other
providers, to establish
one or more employment
pilot programs dedicated
to connecting adults with
autism with employment
opportunities.
MRC Increased funding
Medium-term
1/1/15 to
12/31/16
#9
A) DESE shall hire autism
specialists who will help
ensure the state’s policies
and practices meet the
needs of students with
autism.
DESE Funding
Medium-term
1/1/15 to
12/31/16
B) DESE will develop and
implement a state Autism
Discretionary Grant Program
for local school districts
to increase their capacity
to educate students
with autism in a manner
consistent with their
potential and in the least
restrictive environment.
State
Legislature
Funding and
legislation
Rep. Bradley
HD 2863
Medium-term
1/1/15 to
12/31/16
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#8
(cont.)
D) MRC shall seek funding to
increase the number of job
coaches employed by MRC
and continue to increase
collaboration with other
disability agencies.
State
Legislature;
MRC
Increased funding
Medium-term
1/1/15 to
12/31/16
E) Increase funding for MRC’s
Supported Employment
Supports program.
State
Legislature;
MRC
Increased funding Medium-term
1/1/15 to
12/31/16
F) MRC shall also reach out to
private non-profits, such as
Asperger’s Association of
New England, to help fund
coaching programs.
MRC Increased funding
Medium-term
1/1/15 to
12/31/16
G) MRC shall continue to
work with AANE, and other
providers, to establish
one or more employment
pilot programs dedicated
to connecting adults with
autism with employment
opportunities.
MRC Increased funding
Medium-term
1/1/15 to
12/31/16
#9
A) DESE shall hire autism
specialists who will help
ensure the state’s policies
and practices meet the
needs of students with
autism.
DESE Funding
Medium-term
1/1/15 to
12/31/16
B) DESE will develop and
implement a state Autism
Discretionary Grant Program
for local school districts
to increase their capacity
to educate students
with autism in a manner
consistent with their
potential and in the least
restrictive environment.
State
Legislature
Funding and
legislation
Rep. Bradley
HD 2863
Medium-term
1/1/15 to
12/31/16
42 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#9
(cont.)
C) DESE will take steps to
ensure that school districts
have access to the number
of appropriately qualified
interpreters and translators
necessary to provide
communications in parents’
primary languages.
DESE Funding
Medium-term
1/1/15 to
12/31/16
D) DESE will fund pilot
programs for school
districts working in
partnership with community
organizations throughout
the Commonwealth to
demonstrate best practices
to overcome cultural and
linguistic barriers faced by
parents and children with
autism.
DESE Funding
Medium-term
1/1/15 to
12/31/16
E) DESE will develop a
competency based Autism
Endorsement for licensed
teachers so that teachers
can obtain competencies
necessary to educate
students with autism in
a manner consistent with
their potential in the least
restrictive environment.
DESE Rep. Bradley
HD 2870
Short-term
1/1/13 to
12/31/14
F(i) require that the new
transition specialist
endorsement
competencies include
experience working with
youth and adults with
autism.
DESE
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#9
(cont.)
C) DESE will take steps to
ensure that school districts
have access to the number
of appropriately qualified
interpreters and translators
necessary to provide
communications in parents’
primary languages.
DESE Funding
Medium-term
1/1/15 to
12/31/16
D) DESE will fund pilot
programs for school
districts working in
partnership with community
organizations throughout
the Commonwealth to
demonstrate best practices
to overcome cultural and
linguistic barriers faced by
parents and children with
autism.
DESE Funding
Medium-term
1/1/15 to
12/31/16
E) DESE will develop a
competency based Autism
Endorsement for licensed
teachers so that teachers
can obtain competencies
necessary to educate
students with autism in
a manner consistent with
their potential in the least
restrictive environment.
DESE Rep. Bradley
HD 2870
Short-term
1/1/13 to
12/31/14
F(i) require that the new
transition specialist
endorsement
competencies include
experience working with
youth and adults with
autism.
DESE
Short-term
1/1/13 to
12/31/14
43 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#9
(cont.)
F(ii) work with autism experts
to establish best practice
guidelines for providing
transition assessments
based on The National
Secondary Transition
Technical Assistance
Center (NSTACC) and
shall conduct professional
development necessary
to establish a pool of
transition evaluators with
autism-specific expertise.
DESE
Short-term
1/1/13 to
12/31/14
F(iii) develop an IEP model
form for transition age
youth that addresses the
unique and complex needs
of youth with autism.
DESE
Short-term
1/1/13 to
12/31/14
F(iv) support development of
model transition practices
which successfully
promote employment,
further education, and
independent living.
DESE
Short-term
1/1/13 to
12/31/14
F(v) improve state
monitoring of transition
requirements of special
education law pursuant
to recommendation G
below.
DESE
Short-term
1/1/13 to
12/31/14
G) DESE will develop a more
responsive and effective
system for state monitoring
of compliance with
requirements of special
education laws, including
an improved system for
conducting coordinated
program reviews and
responding to individual
complaints.
DESE
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#9
(cont.)
F(ii) work with autism experts
to establish best practice
guidelines for providing
transition assessments
based on The National
Secondary Transition
Technical Assistance
Center (NSTACC) and
shall conduct professional
development necessary
to establish a pool of
transition evaluators with
autism-specific expertise.
DESE
Short-term
1/1/13 to
12/31/14
F(iii) develop an IEP model
form for transition age
youth that addresses the
unique and complex needs
of youth with autism.
DESE
Short-term
1/1/13 to
12/31/14
F(iv) support development of
model transition practices
which successfully
promote employment,
further education, and
independent living.
DESE
Short-term
1/1/13 to
12/31/14
F(v) improve state
monitoring of transition
requirements of special
education law pursuant
to recommendation G
below.
DESE
Short-term
1/1/13 to
12/31/14
G) DESE will develop a more
responsive and effective
system for state monitoring
of compliance with
requirements of special
education laws, including
an improved system for
conducting coordinated
program reviews and
responding to individual
complaints.
DESE
Short-term
1/1/13 to
12/31/14
44 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
Medium-term
1/1/15 to
12/31/16
Medium-term
1/1/15 to
12/31/16
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
Medium-term
1/1/15 to
12/31/16
Medium-term
1/1/15 to
12/31/16
H) Change special education
State
Amend Special
law and practice to require
Legislature;
Education Law
that a professional with
DESE
Long-termthe new state autism
1/1/17 toendorsement participates in
12/31/18the IEP Team meetings of all
students with autism.
I) Increase state funding
State
Increase funding
for disability services at
Short-term
Community Colleges.
Legislature
1/1/13 to
12/31/14
J) DESE and DHE shall work
DESE; DHE
Increase funding
together to expand the
Inclusive Concurrent
Enrollment program
to all colleges in the
#9
(cont.)
Commonwealth to increase
opportunities to meet the
needs of transition age
youth with autism, including
expansion to support
inclusion in resident life
(dormitory) of the college.
K) Higher education institutions
will design innovative
services, supports and
programming, based upon
current research and best
practices in the field of
disability services and
autism studies, for students
with autism.
45 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#10
A) Increase funding for MRC’s
AT Regional Centers, in
partnership with Institutes
of Higher Education where
appropriate.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
B) Establish one or more
additional AT Regional
Centers in other areas of the
state and fund one or more
mobile AT Regional Centers.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
C) Increase funding for DDS’s
AT Centers across the state
in order to increase the
capacity of these centers to
match individuals who need
assistive technology with the
proper equipment.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
D) Revise the Massachusetts
education licensure
regulations to require that
general education teachers
and specialists receive
sufficient coursework and
practical experience in
methods of augmentative
and alternative
communication.
Revise Education
Regulations
Rep. Bradley
HD2869
Short-term
1/1/13 to
12/31/14
E) Revise Massachusetts
education licensure
regulations to require that
all teachers address use
of assistive technology
and augmentative and
alternative communication.
State
Legislature
Revise Education
Regulations
Rep. Bradley
HD2869
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#10
A) Increase funding for MRC’s
AT Regional Centers, in
partnership with Institutes
of Higher Education where
appropriate.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
B) Establish one or more
additional AT Regional
Centers in other areas of the
state and fund one or more
mobile AT Regional Centers.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
C) Increase funding for DDS’s
AT Centers across the state
in order to increase the
capacity of these centers to
match individuals who need
assistive technology with the
proper equipment.
State
Legislature
Increased funding
Medium-term
1/1/15 to
12/31/16
D) Revise the Massachusetts
education licensure
regulations to require that
general education teachers
and specialists receive
sufficient coursework and
practical experience in
methods of augmentative
and alternative
communication.
Revise Education
Regulations
Rep. Bradley
HD2869
Short-term
1/1/13 to
12/31/14
E) Revise Massachusetts
education licensure
regulations to require that
all teachers address use
of assistive technology
and augmentative and
alternative communication.
State
Legislature
Revise Education
Regulations
Rep. Bradley
HD2869
Short-term
1/1/13 to
12/31/14
46 Report from the Governor’s Special Commission Relative to Autism | 2013
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#11
A) The State Legislature will
amend M.G.L. Chapter
40B (affordable housing)
to redefine housing for
low-income people with
disabilities to count as
affordable housing, with
each bedroom in a multi-
residential house counting
as one affordable unit.
State
Legislature
Amend Existing
Law
Rep. Lewis
HD 2673
Short-term
1/1/13 to
12/31/14
B) Increase funding for MRC’s
MassAccess website to
ensure individuals with
disabilities including adults
with autism can continue to
access current information
on affordable and accessible
housing available in
Massachusetts.
State
Legislature
Increase funding
Short-term
1/1/13 to
12/31/14
C) The DHCD will develop a
formal, statewide housing
policy to establish priorities
for individuals with autism.
DHCD
Short-term
1/1/13 to
12/31/14
D) The Interagency Council on
Housing and Homelessness
will work with DHCD and
assist them in determining
how to effectively serve
adults with autism who are
at risk for homelessness.
DHCD;
Interagency
Council on
Housing and
Homelessness
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#11
A) The State Legislature will
amend M.G.L. Chapter
40B (affordable housing)
to redefine housing for
low-income people with
disabilities to count as
affordable housing, with
each bedroom in a multi-
residential house counting
as one affordable unit.
State
Legislature
Amend Existing
Law
Rep. Lewis
HD 2673
Short-term
1/1/13 to
12/31/14
B) Increase funding for MRC’s
MassAccess website to
ensure individuals with
disabilities including adults
with autism can continue to
access current information
on affordable and accessible
housing available in
Massachusetts.
State
Legislature
Increase funding
Short-term
1/1/13 to
12/31/14
C) The DHCD will develop a
formal, statewide housing
policy to establish priorities
for individuals with autism.
DHCD
Short-term
1/1/13 to
12/31/14
D) The Interagency Council on
Housing and Homelessness
will work with DHCD and
assist them in determining
how to effectively serve
adults with autism who are
at risk for homelessness.
DHCD;
Interagency
Council on
Housing and
Homelessness
Short-term
1/1/13 to
12/31/14
47 2013 | Report from the Governor’s Special Commission Relative to Autism
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#12
A) Provide state funding to the
University of Massachusetts
Medical School in order
to establish the Operation
House Call program as part
of the curriculum.
State
Legislature
Increase funding
Medium-term
1/1/15 to
12/31/16
B) Expand funding for the
Massachusetts Child
Psychiatry Access Project to
augment autism expertise
within the program.
State
Legislature;
DMH
Increase funding
Medium-term
1/1/15 to
12/31/16
C) Identify medical
practitioners across the
Commonwealth who
have received training
and consider themselves
specialists in the healthcare
of individuals with autism
and develop specialty
provider lists that will be
available on the Autism
Resource Center websites.
Increase funding
Short-term
1/1/13 to
12/31/14
D) In order to increase the
number of medical providers
who are knowledgeable in
autism.
State
Legislature
Legislation Rep. Bradley
HD 2872
Medium-term
1/1/15 to
12/31/16
E) Promote additional
specialized training on
autism through medical
continuing education
programs for primary care
physicians, neurologists,
psychiatrists, dentists,
emergency room personnel
and other medical
specialists.
State
Legislature;
draft
legislation
Legislation Rep. Bradley
HD 2884
Short-term
1/1/13 to
12/31/14
F) Encourage hospitals to
develop an "autism team"
who could be called upon
should a patient with autism
enter the emergency room,
need tests or X-rays, need to
be admitted, etc.
State
Legislature;
draft
legislation
Legislation Rep. Bradley
HD 2884
Short-term
1/1/13 to
12/31/14
#13
A) The Autism Commission
will be a permanent entity
responsible for overseeing
the implementation
of the Commission’s
recommendations and
analyzing issues facing
the autism community not
discussed in the report.
State
Legislature
Legislation Rep. Bradley
HD 2879
Short-term
1/1/13 to
12/31/14
Priority recommendations
Entity(ies)
responsible
required for
implementation
Legislation
Filed
State Budget
Line item
Timeline
#12
A) Provide state funding to the
University of Massachusetts
Medical School in order
to establish the Operation
House Call program as part
of the curriculum.
State
Legislature
Increase funding
Medium-term
1/1/15 to
12/31/16
B) Expand funding for the
Massachusetts Child
Psychiatry Access Project to
augment autism expertise
within the program.
State
Legislature;
DMH
Increase funding
Medium-term
1/1/15 to
12/31/16
C) Identify medical
practitioners across the
Commonwealth who
have received training
and consider themselves
specialists in the healthcare
of individuals with autism
and develop specialty
provider lists that will be
available on the Autism
Resource Center websites.
Increase funding
Short-term
1/1/13 to
12/31/14
D) In order to increase the
number of medical providers
who are knowledgeable in
autism.
State
Legislature
Legislation Rep. Bradley
HD 2872
Medium-term
1/1/15 to
12/31/16
E) Promote additional
specialized training on
autism through medical
continuing education
programs for primary care
physicians, neurologists,
psychiatrists, dentists,
emergency room personnel
and other medical
specialists.
State
Legislature;
draft
legislation
Legislation Rep. Bradley
HD 2884
Short-term
1/1/13 to
12/31/14
F) Encourage hospitals to
develop an "autism team"
who could be called upon
should a patient with autism
enter the emergency room,
need tests or X-rays, need to
be admitted, etc.
State
Legislature;
draft
legislation
Legislation Rep. Bradley
HD 2884
Short-term
1/1/13 to
12/31/14
#13
A) The Autism Commission
will be a permanent entity
responsible for overseeing
the implementation
of the Commission’s
recommendations and
analyzing issues facing
the autism community not
discussed in the report.
State
Legislature
Legislation Rep. Bradley
HD 2879
Short-term
1/1/13 to
12/31/14
48 Report from the Governor’s Special Commission Relative to Autism | 2013
vii APPENdiCES vii APPENdiCES
The entire report including the state agency and
subcommittee reports is available online at
www.mass.gov/hhs/autismcommission.
49 2013 | Report from the Governor’s Special Commission Relative to Autism
Appendix A: Legislative Resolve
RESOLVE PROVIDING FOR AN INVESTIGATION AND STUDY BY A SPECIAL COMMISSION RELATIVE
TO AUTISM
Resolved, that a special Commission is hereby established to make an investigation and study
relative to individuals with autistic spectrum disorders, which shall include, but not be limited
to, Asperger’s syndrome, High Functioning Autism and Pervasive Development Disorder.
The Commission shall investigate and study the range of services and supports necessary for
individuals to achieve their full potential across their lifespan, including, but not limited to,
investigating issues related to public education, job attainment and employment, including
supported employment, provision of adult human services, post-secondary education,
independent living, community participation, housing, social and recreational opportunities,
behavioral services based on best practices to ensure emotional well-being, mental health
services and issues related to access for families of children with autism spectrum disorder and
adults who are from linguistically and culturally diverse communities. The Commission shall
address mechanisms to ensure maximization of federal reimbursement and coordination of state
human service agencies. The special commission shall consist of 2 members of the Senate, 1 of
whom shall be appointed by the minority leader; 2 members of the house of representatives, 1
of whom shall be appointed by the minority leader; the secretary of health and human services
or a designee; the commissioner of developmental services or a designee; the commissioner
of mental health or a designee; the secretary of education or a designee; the commissioner of
education or a designee; the director of housing and community development or a designee;
the secretary of labor and workforce development or a designee; the commissioner of the
Massachusetts rehabilitation commission or a designee; the commissioner of early education
and care or a designee; the commissioner of elementary and secondary education or a designee;
the commissioner of higher education or a designee; the secretary of elder affairs or a designee;
the commissioner of children and families or a designee; the commissioner of public health or
a designee; 1 person appointed by the secretary of education; and 14 persons to be appointed
by the governor, 10 of shall be representatives of statewide autism group, 2 of whom shall be
representatives of Advocates for Autism of Massachusetts. The Commission shall report to the
General Court the results of its investigation and study and its recommendations, if any, by filing
the same with the Clerk of the Senate and the Clerk of the House of Representatives not later
than January 2013.
Appendix B: Overview of Commission Process
The Autism Commission was signed into law in April 2010 (see section A of the appendix) and
was charged to make an investigation and study of the lifespan needs of individuals with autistic
spectrum disorders, including, but not limited to, Asperger’s syndrome, High Functioning Autism
and Pervasive Development Disorder. Members of the Commission were appointed based on their
personal and professional expertise in various forms of autistic spectrum disorders. A description
of the appointed members of the Commission and their affiliations can be reviewed in section C
of the appendix.
The Autism Commission held its first meeting on October 25th, 2010 and met 24 times through
January 2013. Every meeting was open to the public to attend. The public attending meetings
were encouraged to participate in the Commission discussions. Specifically, four of the
Commission meetings designated time on the agenda for the public to voice their thoughts and
concerns about autism services in Massachusetts. To further include the voice of the public in
the Commission’s final report; in the spring of 2012 the Commission requested that members,
professionals, and allies of the autism community submit stories about their experiences related
to autism. The chosen vignettes were included in section V. of the report.
At the Commission meetings, members were educated on the state and private services available
to children and adults diagnosed with autism in Massachusetts. Representatives from MassHealth,
the Executive Office of Health and Human Services, the Department of Public Health, the Division
of Early Education and Care, the Department of Elementary and Secondary Education, the
Department of Children and Families, the Department of Developmental Services, the Children’s
Behavioral Health Initiative, the Department of Mental Health, the Massachusetts Rehabilitation
Commission, and the Office of Long-term Care made presentations to the Commission on state
services available to some individuals diagnosed with autism in Massachusetts. Citizen members
presented on topics including but not exclusive to behavioral health and mental health issues
in the autism community and access to health insurance coverage for autism treatments. Upon
completion of each presentation, Commission members discussed the services detailed and what
gaps continued to exist within the system of supports. All of these presentations can be viewed at
http://www.mass.gov/hhs/autismcommission.
In addition to the work of the Commission, four sub-committees were created to analyze the
needs of individuals with autism in certain age groups. The sub-committees met between January
2011 and August 2011. Each sub-committee drafted a report and made a presentation to the full
Commission on their sub-committee’s findings. The Commission used the information the subcommittees
reported to help narrow its own priorities and recommendations. More information
about the work of the sub-committees including each sub-committee’s findings can be reviewed
in section E. of the appendix.
Based on Commission’s discussions at meetings between October 2010 and June 2011, a document
containing key issues, recommendations and action steps was compiled and shared with the
entire Commission. Using the content in this document, a survey was created and disseminated
in July 2011. Commission members were asked to complete the survey and the results were
used to prioritize issues and recommendations. The entire Commission met in August 2011 for
a working session to finalize the Commission’s priorities for the final report. In October 2011,
the Chair of the Commission created a writing group consisting of 6 Commission members and
2 staff to the Commission. The writing group met between October 2011 and November 2012
and drafted problem statements, recommendations and action steps based on the set priorities
of the Commission. Throughout this time period, Commission members were updated on the
progress of the report and gave feedback on the document. The final copy of the challenges,
recommendations and action steps that the majority of the Commission endorsed37 can be
reviewed in section V. of this report.
37 The State Agency representatives recused themselves from any of the final decisions on the findings and recommendations that are included in this report since most of
the recommendations are for action steps to be taken by the Administration. Upon the filing of the Report, the state agencies will share the recommendations with others
in the Administration and determine what action steps are possible.
Appendix C: Glossary
Adult Foster Care (“AFC”)
Services provided in a home setting by a caregiver who resides with the individual with a disability
age 16 and older. Services provided include assistance with adult daily living skills and personal
care. Individuals who participate in Adult Foster Care must meet MassHealth financial and clinical
eligibility requirements.
Adult Service Coordinators
Arrange, coordinate, and monitor the services and supports that Department of Developmental
Services (“DDS”) provides, purchases or arranges for an individual. The Service Coordinator
will chair and develop an Individual Support Plan (ISP) which helps the DDS team work with
the individual to plan his or her life. The ISP addresses areas of life which are important to the
individual. Portions of the services provided by the Service Coordinators are reimbursed through
the Medicaid State Plan through CMS.
Applied Behavior Analysis (“ABA”)
An evidence- based treatment for individuals with autism that utilizes positive reinforcement to
encourage positive behavior while at the same time reducing interfering behaviors. ABA can also
help children and adults with autism learn new skills.
An Act Relative to Insurance Coverage for Autism (“ARICA”)
2010 Law in Massachusetts requiring private insurers to cover medically necessary treatment for
autism.
Asperger Syndrome
One of the autism spectrum disorders (see definition below) characterized by normal intelligence.
Augmentative and Alternative Communication
Individuals unable to communicate orally can utilize other methods of communication to express
themselves. Augmentative and Alternative communication can be achieved with assistive
technology devices, including computers and iPads or through the exchange of pictures and
symbols.
Autism Case Management Services
Intensive case management supports are provided to assist families whose children are
enrolled in the Autism Waiver Program. Each family is assigned to work with a Department of
Developmental Services (“DDS”) Autism Clinical Manager who oversees the development of the
individual plan of services, provides on-going support and technical assistance around the in-
home behavioral supports and provides oversight and assistance to the Autism Support Brokers
who are employed through the Autism Support Centers. These Brokers work directly with families
to provide assistance with staffing, budgeting, paperwork and day-to-day guidance around
program rules and regulations.
Autism IEP Act
This Massachusetts law requires the Individualized Education Plan (“IEP”) Team to consider and
specifically address the full range of a child’s complex communication, social, behavioral, and
academic needs resulting from ASD to help ensure provision of appropriate supports and services.
Autism Spectrum Disorder
A developmental disability significantly impacting verbal and nonverbal communication and
social interaction. Autism Spectrum Disorders, as defined by the DSM-IV, include Autism, Pervasive
Developmental Disorder-Not Otherwise Specified, Asperger Syndrome, Rett Syndrome and
Childhood Disintegrative Disorder.
Autism Support Centers
There are seven autism support centers in Massachusetts offering assistance to families of children
with autism. Their staff have expertise in autism and offer programming for parents and children
with autism, including support groups, February Vacation camps, and after school programming.
Autism support brokers who assist with Waiver services are also housed in the autism support
centers. Many of the autism support center staff are parents of children with autism.
Board Certified Behavior Analyst (“BCBA”)
A national certification process for providers of ABA services overseen by the Behavior Analyst
Certification Board (BACB). A law in Massachusetts requires ABA providers to be licensed ,
and meet specific education, experience, and examination requirements. This will be effective
sometime in 2014.
Bureau of Special Education Appeals (“BSEA”)
The BSEA conducts mediations, advisory opinions and hearings to resolve disputes among parents,
school districts, private schools and state agencies concerning eligibility, evaluation, placement,
individualized education plans (IEPs), special education services and procedural protections for
students with disabilities.
Children’s Autism Medicaid Waiver
The Children’s Autism Waiver Program is a Medicaid Home & Community Based Wavier program
that provides intensive in-home and community based services to MassHealth eligible children
under age 9 who have an autism diagnosis and are at risk for institutionalization. The Waiver
Program is administered by the Department of Developmental Services’ Autism Division, and up
to 157 children may participate in the Waiver program at any given time. Over the course of the
Waiver year, 205 children may be served. The federal government reimburses Massachusetts at
50% of the cost of the Waiver Program. Children chosen to participate in the Waiver program are
eligible for up to $25,000 a year of services for a three year period up until their 9th birthday. All
staff working with the waiver have extensive experience working with children with autism.
Co-Morbid Disorder
The appearance of two more illnesses at the same time, such as the co-occurrence of autism and
schizophrenia.
Co-Occurring Mental Illness
An individual diagnosed with two or more mental health disorders.
The Department of Elementary and Secondary Education/Department of Developmental Services
Residential Placement Prevention Program (“DESE/DDS” Program)
The DESE/DDS program provides supports to families to keep children at home and reduce the risk
for residential placement of students who are in school and DDS eligible. It also provides supports
to families who opt to bring their children home from a residential placement. Children must be
6-17 years of age at the time of enrollment in the Program. The DESE/DDS Program is funded by
the state through funds allocated to Department of Elementary and Secondary Education and
administered by the Department of Developmental Services. There are currently 485 students
receiving services through the DESE/DDS program, 75% of whom have an autism diagnosis.
Day Hab Program
Serves individuals with intellectual disabilities or other developmental disabilities providing
a structured day program designed to build skill development, improve level of functioning,
and facilitate independent living and self-management skills. The services available are nursing
services and oversight such as; administration of medications and treatments and monitoring
each member’s health status, developmental skills training, therapy services, and assistance with
Activities of Daily Living (ADLs). Day Hab supports individuals over 22. Consumers must meet both
financial and clinical eligibility requirements.
Early Intervention (“EI”)
EI in Massachusetts is a statewide, integrated, developmental service available to families of
children between birth and three years of age. Children may be eligible for EI if they have
developmental difficulties due to identified disabilities, or if typical development is at risk due to
certain birth or environmental circumstances. Children with autism are automatically eligible for
Early Intervention services. EI provides family-centered services that facilitate the developmental
progress of eligible children. EI helps children acquire the skills they will need to continue to grow
into happy and healthy members of the community.
Early Intervention Specialty Services
Any child enrolled in early intervention with a diagnosis on the autism spectrum confirmed by
a physician or licensed psychologist is eligible for Specialty Service Programs for children with
autism spectrum disorder (“ASD”). These intensive, individualized treatment programs promote
social skills and communication and manage behavior that interferes with learning. As active
participants in these programs, parents learn strategies that can help their children progress.
Specialty Service Programs for children with ASD work in conjunction with community Early
Intervention Programs to deliver comprehensive, coordinated service to children on the spectrum
and their families.
Inclusive Concurrent Enrollment Program (“ICE”)
The state-funded Inclusive Concurrent Enrollment Discretionary Grant Pilot Program develops
new partnerships between high schools and public institutions of higher education to offer
students with severe disabilities, ages 18-22, who have not passed Massachusetts Comprehensive
Assessment (“MCAS”) the opportunity to participate in inclusive college courses (credit or
noncredit) with necessary services and supports, as determined through the school district’s special
education process.
Individualized Education Plan (“IEP”)
The IEP is a written statement signed by the parent that lists services designed to meet the
unique needs of eligible children. It can also contain “related services” to help the child access
the general curriculum. Review all the potential services listed on an IEP grid. An IEP is legally
enforceable.
Interagency Council on Housing and Homelessness
The Council works to implement the recommendations from the Massachusetts Commission to
End Homelessness and uses a “housing-first” approach to ending homelessness.
Intensive Family Flexible Support Services (“IFFS”) Program
These are time limited services and involve additional supports, problem solving with families and
a greater level of Case Management than what is offered through the Family Support Centers.
The goal is to get the family/child stabilized and then gradually decrease supports typically over a
period of six months.
Least Restrictive Environment
The Individuals with Disabilities Education Act (“IDEA”) is a federal law governing special
education. It was originally enacted in 1975 and was most recently revised in 2004. The key
goal of the IDEA is to ensure that eligible children with disabilities receive an education that
will support their educational advancement, post-secondary education and/or employment,
and personal independence Students with disabilities must be educated in the Least Restrictive
Environment (“LRE”). To the maximum extent feasible, students should be educated among their
typical peers and according the statewide curriculum framework. The IDEA’s preference for the
LRE means that students must receive their special education services within a general education
classroom whenever possible. Special or separate classes and schooling should only occur when
supplementary aids and services, such as resource room or pull-out services, are insufficient to
satisfy the child’s needs.
1-800-AGE-INFO
An elder services web site and 800 number created by Massachusetts Executive Office of Elder
Affairs and the Massachusetts Healthcare Association. It provides information on programs for the
elderly and assistance in locating services throughout Massachusetts.
MassAccess
A housing registry that helps people to find affordable housing in Massachusetts. A key feature of
the Registry is to highlight homes for people with disabilities who need accessible or barrier-free
housing.
Massachusetts Act Early Program
This state program aims to educate parents and health care, early childhood and educational
professionals about healthy childhood development, early warning signs of developmental
disorders including autism spectrum disorder, the importance of routine developmental screening,
and timely early intervention whenever there is a concern. It is an affiliate of the CDC “Learn the
Signs, Act Early” program to promote early, periodic developmental screening of all children.
www.maactearly.org
Massachusetts Child Psychiatric Access Program (“MCPAP”)
This program provides psychiatric expertise to help primary care physicians recognize the signs
of mental illness in children and help them provide care to children with mental health issues in
their practices.
MassHealth
MassHealth is a public health insurance program offered by the state to low- to medium-
income residents of Massachusetts, including individuals with disabilities. The Commonwealth
is reimbursed approximately 50% of the cost of the MassHealth program by the federal
government.
Mass Rehabilitation Commission’s Assistive Technology Program
The Assistive Technology Program was created by the Mass Rehabilitation Commission (“MRC”) to
enable individuals with severe disabilities to access assistive technology devices and training. MRC
contracts with three organizations for the provision of AT assessments, purchase and set-up of
equipment, training and follow-up. These providers provide services on a regional basis and have
on-site AT devices to be used for evaluation and training.
Operation House Call
A medical education program started at the Boston University School of Medicine which is offered
to third year medical students at several Boston area medical schools during their pediatric
rotation. The goal of the program is to help medical students better understand the challenges
faced by families of children with intellectual and developmental disabilities and increase interest
in caring for individuals with disabilities. The Arc of Massachusetts collaborates with the program.
Students who participate visit families in their homes and learn about the medical needs of their
children.
Personal Care Attendant Program
The Personal Care Attendant Program provides MassHealth funds for individuals with chronic
disabilities to hire staff to provide physical assistance with personal care.
Respite Care
Temporary help provided by a professional to caregivers to allow them a break in caring for a
family member with an illness or a disability.
Schizophrenia
A chronic, severe brain disorder that often manifests itself in an individual in their late teens and
early twenties. Individuals with schizophrenia may experience paranoia and hear voices.
Section 8 Housing
A federal program that helps low-income Massachusetts residents, including those with
disabilities, to pay for their housing. Tenant-Based vouchers enable individuals to choose their
own apartments and limit rental payments to 30% of income. Project-based vouchers require an
individual to live in a particular housing unit.
Self-Funded Insurance Plans
Pursuant to the federal Employee Retirement Income Security Act (“ERISA”), certain “self-funded”
or “self-insured” insurance plans are subject only to federal law and exempt from state insurance
regulations, including mandates. In those instances where employers bear the entire risk for
employee insurance claims, such plans are exempt from state regulation. As a result of ERISA,
many employees are unable to access benefits required by An Act Relative to Insurance Coverage
for Autism “ARICA” unless their employer volunteers to comply.
Transition Coordinators
The primary link to information and assistance from DDS during the transition from special
education to adult life. They help individuals and the families understand what DDS can offer
and assist with identifying and securing requested supports. The Transition Service Coordinator
will also chair the Individual Transition Plan (ITP) meeting. From this meeting, they will develop
a document that specifies what kinds of support the student/family is requesting upon leaving
special education. Soon after graduation or when an individual leaves school and transitions into
adult supports, an individual’s case will be transferred to an adult service coordinator within the
area office.
Transition Planning
Helping an individual with disabilities move from the school setting into adult services. Areas to
be considered include: post-secondary education options, housing, employment, public benefits,
recreation and social interests.
Vocational Rehabilitation Division
A division within Mass Rehabilitation Commission (“MRC”), it provides counseling, assessment,
training and job placement support as well as assistance with adaptations and accommodations
that will ultimately result in competitive employment for the individual with a disability.
AcknOwledgements
The Massachusetts Autism Commission Report
is the result of the combined effort of legislators, state agency
representatives, and citizens of the Commonwealth. Specifically,
the Autism Commission gratefully acknowledges and thanks:
l
The families and self-advocates who attended Commission and
subcommittee meetings and were involved in any capacity with moving
this project forward. Your insights ensured that the findings and
recommendations reflected as much as possible the experiences of the
Autism community in the Commonwealth.
l
The parents, individuals with autism, and the professionals who submitted
vignettes to be included in the final report. Your vignettes both educated
members of the Autism Commission about specific experiences of the
Autism community in Massachusetts and illustrated issues and triumphs of
your community in ways no amount of research could reflect.
l
Members of the Autism Commission writing group including Chair
Barbara L’Italien, Ann Guay, Amy Weinstock, Michael Wilcox, Julia Landau,
Margaret McPhee, and Rita Gardner who each contributed a tremendous
amount of time and effort to the development of this document.
l
Jennifer Barrelle for her early guidance and
organizing of the Autism Commission.
l
Members of state agencies who provided information
and support during the Commission process specifically
Rosalie Edes, Elin Howe, and Janet George.
l
The Massachusetts Developmental Disabilities Council (MDDC)
for providing staff support to the Commission.
l
Faith Behum, MDDC Policy Specialist, for her exceptional
support and commitment to the Commission,
the subcommittees and writing groups.
l
Advocates for Autism of Massachusetts, The Flutie Foundation,
Autism Speaks, and the Massachusetts Developmental Disabilities Council
for their contributions to print this report.
l
Susan Sutherland for her fine work in
completing the layout and design of the report.